sicklecelldisease.org

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# SCDAA

## Sitemaps

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## Posts

- [News](https://sicklecelldisease.org/news/)
- [SCDAA and NHLBI To Host Event](https://sicklecelldisease.org/uncategorized/scdaa-and-nhlbi-to-host-event/) - The National Heart, Lung, and Blood Institute (NHLBI), part of the National Institutes of Health (NIH), in partnership with the Sickle Cell Disease Association of America, Inc. (SCDAA), will host Research That Heals: Partnering to Transform SCD Care on June 25-26, 2026. This 1.5-day hybrid (in-person and virtual) community forum will be a crucial platform for engaging directly with the sickle cell disease (SCD) community, including individuals with SCD and their caregivers, healthcare providers and community-based organizations. During the forum, participants will discuss and develop solutions to enhance care and improve the quality of life for children and adults living with sickle cell disease.
- [2026 National Abstract Competition](https://sicklecelldisease.org/uncategorized/2026-national-abstract-competition/) - The 2026 National Abstract Convention is now open! If you are a researcher, community-based member organization, physician, nurse, social worker or someone working on behalf of people living with sickle cell disease and their families, the Sickle Cell Disease Association of America, Inc. would like to highlight your work at the 54th Annual National Convention, October 15-17, 2026, in-person.
- [Novo Nordisk Announces Promising Topline HIBISCUS Study Results](https://sicklecelldisease.org/news/novo-nordisk-announces-promising-topline-results-from-hibiscus-study/) - In an announcement, Novo Nordisk shared that Etavopivat is the first in a new class of drugs to meet both co-primary endpoints in the phase 3 HIBISCUS trial, substantially reducing vaso-occlusive crisis events and improving hemoglobin response in sickle cell disease.
- [SCDAA Masterclass (Hosted by Agios Cheat Codes) Now Available](https://sicklecelldisease.org/news/scdaa-masterclass-sickle-cell-in-the-media-scene-heard-hosted-by-agios-cheat-codes-now-available/) - Our final 2025 SCDAA Masterclass - Sickle Cell in the Media: Scene & Heard (Hosted by Agios Cheat Codes) - is now available! Recorded live at the 2025 SCDAA Convention in Chicago, this special Masterclass dives into how sickle cell disease is portrayed in film, TV and beyond.
- [SCD Advocacy Update: March 2026](https://sicklecelldisease.org/advocacy/scd-advocacy-update-march-2026/) - CONGRESS PASSES FISCAL YEAR 2026 FUNDING PACKAGE WITH BIG WINS FOR THE SICKLE CELL DISEASE COMMUNITY In early February, Congress finally advanced, and the President signed into law, a funding package for federal programs for fiscal year (FY) 2026, which runs through September 30, 2026. All three federal sickle cell disease programs — Health Resources and Services Administration’s (HRSA’s) Sickle Cell Disease Treatment Demonstration Program, HRSA’s Sickle Cell Disease Newborn Screening Follow Up Program and the Centers for Disease Control and Prevention’s (CDC) Sickle Cell Data Collection Program — were maintained with the same funding levels as FY25.
- [In Remembrance of KiKi Shepard](https://sicklecelldisease.org/news/in-remembrance-of-kiki-shepard/) - The Sickle Cell Disease Association of America, Inc. (SCDAA) mourns the loss of KiKi Shepard, an actress and dedicated sickle cell advocate, who passed away recently at the age of 74. Many knew KiKi as a longtime co-host of the “Showtime at the Apollo” variety show, but she was also the founder of sickle cell nonprofit The KIS Foundation and worked closely with many individuals and organizations in the SCD community, including SCDAA.
- [MedicAlert Foundation, SCDAA & Fulcrum Therapeutics Partner](https://sicklecelldisease.org/news/medicalert-foundation-scdaa-fulcrum-therapeutics-partner/) - MedicAlert Foundation, the leading nonprofit providing medical IDs and emergency medical information services, Sickle Cell Disease Association of America, Inc., (SCDAA), the national voice for people affected by sickle cell disease and their caregivers, and Fulcrum Therapeutics Inc. (Fulcrum) (Nasdaq: FULC), a leader in advancing therapies for underserved patient populations, today announced a new partnership designed to help streamline and expedite emergency department (ED) care for people living with sickle cell disease (SCD) through rapid access to patient-specific care plans.
- [Fulcrum Therapeutics to Host Congressional Briefing](https://sicklecelldisease.org/advocacy/fulcrum-therapeutics-to-host-congressional-briefing/) - Fulcrum Therapeutics will host a briefing to bring together clinicians, patient advocates, researchers and policy leaders for a moderated panel discussion on the current treatment landscape for sickle cell disease and what Congress can do to improve access and outcomes for the 100,000 Americans living with this condition.
- [Black History Month 2026: Dr. Charles Drew](https://sicklecelldisease.org/uncategorized/bhm-dr-charles-drew/) - Our final #SCDHistoryHighlight of 2026 explores the life and career of Dr. Charles Drew, a pioneering physician whose work paved the way for our modern-day blood banking system. Thanks to his research, individuals with sickle cell disease have access to safe and timely blood transfusions.
- [Black History Month 2026: Dr. Roland Scott](https://sicklecelldisease.org/uncategorized/black-history-2025-dr-roland-scott/) - Our next #SCDHistoryHighlight shines a light on the life and legacy of the "father of sickle cell disease" - Dr. Roland B. Scott. Dr. Scott's groundbreaking research and dedication to patients during a time of intense discrimination paved the way for progress in SCD treatment.
- [CMO Speaks: Gene Therapy for SCD (Part 1)](https://sicklecelldisease.org/uncategorized/cmospeaks-genetherapy1/) - CMO Speaks is a blog featuring the voices of SCDAA’s clinical leadership team. Part 1 of our Gene Therapy series was written by Dr. Lewis Hsu and Dr. Sri Lakshmi Jamalapur. How can you cure an inherited disease like sickle cell disease? One way would be to develop some extremely effective medications that would alleviate all the symptoms. Another would be to transplant stem cells that produce red blood cells. But the ultimate way to cure genetic disease is with gene therapy.
- [June 19, 2023, is Officially Sickle Cell Awareness Day in Maryland!](https://sicklecelldisease.org/uncategorized/june-19-2023-is-officially-sickle-cell-awareness-day-in-maryland/) - Maryland Governor Wes Moore has signed a proclamation to make June 19, 2023, Sickle Cell Awareness Day! This recognition goes a long way in raising awareness about sickle cell disease, combating prejudices and lifting up our community. Thank you for supporting our cause and helping us to “Shine the Light on Sickle Cell Disease!”
- [Women’s History Month: Dr. Marilyn Hughes Gaston](https://sicklecelldisease.org/uncategorized/womens-history-month-dr-marilyn-hughes-gaston/) - This #WomensHistoryMonth, we are highlighting prominent women who have made lasting contributions to the SCD community. #WomenInMedicine #WomensHistoryMonth Meet Dr. Marilyn Hughes Gaston, an internationally recognized leader in health care equality and sickle cell disease advocacy. Since 1976, she has dedicated her career to improving medical care for poor and minority families and has contributed
- [SCDAA names new board members](https://sicklecelldisease.org/news/scdaa-names-new-board-members/) - The Sickle Cell Disease Association of America, a national nonprofit membership organization that advocates for people affected by sickle cell, named Melissa Creary and Monica Mitchell to the association’s board of directors and Chris Ruffin Jr. to the Corporate Advisory Council. Melissa Creary is senior director for the Office of Public Health Initiatives at the
- [Women’s History Month: Dr. Yvette Francis-McBarnette](https://sicklecelldisease.org/uncategorized/womens-history-month-dr-yvette-francis-mcbarnette/) - This #WomensHistoryMonth, we are highlighting prominent women who have made lasting contributions to the SCD community. #WomenInMedicine #WomensHistoryMonth Meet Dr. Yvette Francis-McBarnette, a Jamaican-born physician who specialized in treating children with sickle cell anemia. As one of the first Black women to graduate from the Yale School of Medicine, Dr. Francis-McBarnette was credited with successfully
- [Women's History Month: Dr. Helen M. Ranney](https://sicklecelldisease.org/uncategorized/6412/) - This #WomensHistoryMonth, we are highlighting prominent women who have made lasting contributions to the SCD community. #WomenInMedicine #WomensHistoryMonth Meet Dr. Helen M. Ranney, physician and hematologist. Born in 1920, Dr. Ranney dedicated her work to researching blood disorders. Her groundbreaking work on sickle cell anemia included the first description of abnormal blood cell structure and
- [Women's History Month: Dr. Angella Dorothea Ferguson](https://sicklecelldisease.org/uncategorized/womens-history-month-dr-angella-dorothea-ferguson/) - This #WomensHistoryMonth, we are highlighting prominent women who have made lasting contributions to the SCD community. #WomenInMedicine #WomensHistoryMonth Meet Dr. Angella Dorothea Ferguson, a pediatrician and sickle cell pioneer. Born in 1925, Dr. Ferguson dedicated her life to researching sickle cell disease, an unknown condition at the time. Her groundbreaking work led to the development
- [#BlackHistoryMonthHeroes: Carlton Haywood Jr.](https://sicklecelldisease.org/uncategorized/blackhistorymonthheroes-carlton-haywood-jr/) - SCDAA’s #BlackHistoryMonthHeroes highlights prominent Black members of our community who have made their mark on our history. Stay tuned this month to learn more about these inspiring individuals. #BlackHistoryMonth Meet the late Carlton Haywood Jr. – a trailblazer in the field of health equity and bioethics. Born with sickle cell disease, Carlton never let his
- [#BlackHistoryMonthHeroes: Dr. Kwaku Ohene-Frempong](https://sicklecelldisease.org/uncategorized/blackhistorymonthheroes-dr-kwaku-ohene-frempong/) - SCDAA’s #BlackHistoryMonthHeroes highlights prominent Black members of our community who have made their mark on our history. Stay tuned this month to learn more about these inspiring individuals. #BlackHistoryMonth Meet the late Kwaku Ohene-Frempong, M.D., – a renowned pediatric hematologist-oncologist and expert in sickle cell disease. Dr. Ohene-Frempong grew up in Ghana, where he excelled
- [#BlackHistoryMonthHeroes: Hertz Nazaire](https://sicklecelldisease.org/uncategorized/blackhistorymonthheroes-hertz-nazaire/) - SCDAA’s #BlackHistoryMonthHeroes highlights prominent Black members of our community who have made their mark on our history. Stay tuned this month to learn more about these inspiring individuals. Meet the late Hertz Nazaire – a talented artist and author who used his brush to spread awareness about sickle cell disease. At just 9 years old,
- [MARAC Statement: Penicillin Shortage](https://sicklecelldisease.org/marac-statement/marac-statement-penicillin-shortage/) - Penicillin VK solution is suffering from intermittent supply shortages. This can affect children with sickle cell disease. Penicillin VK in liquid form is prescribed for babies and young children with sickle cell disease who are unable to swallow pills as standard care, twice a day, starting as early as 6-8 weeks of age. Children less
- [CMO Speaks: Fertility Care and SCD](https://sicklecelldisease.org/cmo-speaks/cmo-speaks-fertility-care-and-scd/) - CMO Speaks is a blog featuring the voices of SCDAA’s clinical leadership team. The below article was written by Dr. Lewis Hsu, SCDAA chief medical officer, with input from Dr. Lydia Pecker. NPR recently produced this segment with sickle cell warrior and advocate Teonna Woolford on fertility care and SCD. This is an underdiscussed topic
- [MARAC Statement on Influenza](https://sicklecelldisease.org/marac-statement/marac-statement-on-influenza/) - December 6, 2022 — The Sickle Cell Disease Association of America (SCDAA) Medical and Research Advisory Committee (MARAC) shares the following: For individuals with sickle cell disease and their caregivers What is influenza, and why should I worry about it? Influenza (“flu”) is a contagious viral infection that can cause severe medical problems in anyone.
- [NFL players spotlight Sickle Cell Disease Association of America](https://sicklecelldisease.org/uncategorized/nfl-players-spotlight-sickle-cell-disease-association-of-america/) - The NFL’s My Cause My Cleats campaign features players showcasing important causes on their cleats each year during Week 13 games in early December. San Francisco 49ers running back Tevin Coleman and Arizona Cardinals linebacker Markus Golden will support the Sickle Cell Disease Association of America through the NFL’s My Cause My Cleats program by
- [MARAC Encourages Clinical Research Studies](https://sicklecelldisease.org/marac-statement/marac-encourages-clinical-research-studies/) - The Sickle Cell Disease Association of America (SCDAA) Medical and Research Advisory Committee (MARAC) believes that progress in sickle cell disease (SCD) is tied to clinical trials and comprehensive care. For this reason, we encourage individuals with SCD to consider participating in research. It’s because thousands of courageous children and adults with sickle cell disease
- [MARAC Advisory Statement: Immunizations](https://sicklecelldisease.org/marac-statement/marac-advisory-statement-immunizations/) - August is National Immunization Awareness Month. What does that mean for individuals with sickle cell disease (SCD)? The Big Picture from SCDAA MARAC Individuals with sickle cell disease are more likely to have complications from many infections and receive a lot of benefit from immunizations. Family members can help protect a child or adult with
- [MARAC Advisory Statement: Monkeypox](https://sicklecelldisease.org/marac-statement/marac-advisory-statement-monkeypox/) - July 20 – The Sickle Cell Disease Association of America’s Medical and Research Advisory Committee (MARAC) is aware of the news about monkeypox and is monitoring the situation. Please follow advisories from organizations such as the Centers for Disease Control and Prevention to avoid close, skin-to-skin contact with individuals who have a rash that looks
- [Memorial Service for Dr. Kwaku Ohene-Frempong](https://sicklecelldisease.org/uncategorized/memorial-service-for-dr-kwaku-ohene-frempong/) - Dr. Kwaku Ohene-Frempong, a visionary sickle cell doctor and advocate, passed away on May 7, 2022, at 76. A memorial service to honor his life has been planned for Saturday, June 25, in Accra, Ghana. The memorial will be livestreamed for the hundreds of community members who will be unable to attend the live event
- [In Memory of Dr. Kwaku Ohene-Frempong](https://sicklecelldisease.org/uncategorized/in-memory-of-dr-kwaku-ohene-frempong/) - We are devastated to learn of the death of Dr. Kwaku Ohene-Frempong on Saturday, May 7, 2022. Dr. Ohene-Frempong was a true leader in the sickle cell community and dedicated his life and career to working with SCD. He held many roles on the Sickle Cell Disease Association of America board of directors over the
- [In Memory of Carlton Haywood, Jr., Ph.D.](https://sicklecelldisease.org/uncategorized/in-memory-of-carlton-haywood-jr-ph-d/) - We are devastated to share the news of the passing of Carlton Haywood, Jr., Ph.D., on December 31, 2021. Carlton was an accomplished academic whose research focused on bioethics and sickle cell. His experiences as a sickle cell warrior guided his work as a scholar and an advocate. As such, Carlton was a well-respected and celebrated
- [SCDAA names Regina Hartfield CEO](https://sicklecelldisease.org/news/scdaa-names-regina-hartfield-ceo/) - The Sickle Cell Disease Association of America (SCDAA) named Regina Hartfield as CEO and president effective Jan. 14, 2022. Hartfield has served on the association’s board of directors for three years, including as chair of the fundraising committee. “Regina is an outstanding choice as our next CEO,” said Thomas Johnson, chair of the SCDAA board. “Her
- [A Word From Our Sponsor: bluebird bio](https://sicklecelldisease.org/uncategorized/a-word-from-our-sponsor-bluebird-bio/) - Thank you to bluebird bio for their generous support of our 49th Annual National Convention! How can you help to spark change in Sickle Cell Disease (SCD)? By staying proactive in sickle cell care and planning for the future. Be the Spark, a platform for education and information brought to you by bluebird bio, was
- [MARAC Advisory Statement Update About COVID-19 Vaccines](https://sicklecelldisease.org/news/marac-advisory-statement-update-about-covid-19-vaccines/) - September 24, 2021 — News about COVID-19 continues to move quickly as we weather the pandemic. The Sickle Cell Disease Association of America’s Medical and Research Advisory Committee provides the following updates on vaccination recommendations: 1. Individuals with SCD are now eligible for the third dose of the COVID-19 vaccine. The CDC recommends that people
- [MARAC Issues Updated COVID-19 Guidance](https://sicklecelldisease.org/news/marac-issues-updated-covid-19-guidance/) - August 26, 2021 – The Sickle Cell Disease Association of America Medical and Research Advisory Committee has released two statements with updated COVID-19 guidance. MARAC recommendations are making a minor shift to emphasize a more individualized approach: Continue to recommend vaccination against COVID. For booster dose of vaccine, currently SCD is not eligible but expect
- [SCDAA names government relations manager](https://sicklecelldisease.org/news/scdaa-names-government-relations-manager/) - Sickle Cell Disease Association of America named John Otsuki as government relations manager. Otsuki brings experience in regulatory and legislative affairs, government relations and strategic planning. Prior to joining the Sickle Cell Disease Association of America, Otsuki was a government relations manager at Jones Walker LLP, where he maintained relationships with members of Congress and
- [Sickle Cell Disease Association of America announces new teen ambassador](https://sicklecelldisease.org/news/sickle-cell-disease-association-of-america-announces-new-teen-ambassador/) - Sickle Cell Disease Association of America (SCDAA) named 14-year-old Ayana Lee Johnson the 2021-2023 SCDAA National Teen Ambassador. She was selected through a nationwide competition formerly known as the Poster Child Contest that started in 1976. Her reign will begin with an official coronation during SCDAA’s Annual National Convention Oct. 12-16. In her role as
- [MARAC Statement on Gene Therapy & Bone Marrow Therapies](https://sicklecelldisease.org/news/marac-statement-on-gene-therapy-bone-marrow-therapies-2/) - Please note: A previous version of this advisory incorrectly stated that MARAC is aware of three cases of leukemia and other cancer-like conditions in patients who have undergone gene therapy. MARAC is only aware of two such cases. The below statement has been updated accordingly. May 15, 2021 – The Sickle Cell Disease Association of
- [Temporary Suspension of Clinical Trials](https://sicklecelldisease.org/news/marac-statement-temporary-suspension-of-clinical-trials/) - March 1, 2021 – The Sickle Cell Disease Association of America’s Medical and Research Advisory Committee (MARAC) is aware of the announcement on February 16, regarding the temporary suspension of bluebird bio clinical trials of LentiGlobin Gene Therapy for Sickle Cell Disease and the pause of all commercial use of bluebird bio European gene therapy.
- [Black History Month: Dr. Roland Scott](https://sicklecelldisease.org/uncategorized/black-history-month-dr-roland-scott/) - For our final #SCDHistoryHighlight of Black History month, we are excited to reflect on the life and work of Dr. Roland Scott. Dr. Scott has been celebrated as the “father of sickle cell disease” in the United States, and completed groundbreaking research as he advocated for his patients during a time of intense discrimination. Dr.
- [Black History Month 2021: Dr. Angella Dorothea Ferguson](https://sicklecelldisease.org/uncategorized/black-history-month-2021-dr-angella-dorothea-ferguson/) - We’re excited to continue our celebration of Black history this week by highlighting the life and work of Dr. Angella Dorothea Ferguson, a pediatrician and sickle cell pioneer. Dr. Ferguson’s research changed the landscape for sickle cell diagnosis in children and made a huge impact on how we identify and treat SCD to this day.
- [SCDAA Celebrates Black History Month 2021](https://sicklecelldisease.org/uncategorized/scdaa-celebrates-black-history-month-2021/) - Sickle cell disease plays an important role in black history, and vice versa. This month, we will highlight African American sickle cell pioneers to learn more about our community’s history. Our first #SCDHistoryHighlight shines a light on the life and work of our co-founder Dr. Charles F. Whitten. Dr. Whitten was a pediatric hematologist whose
- [Congressional Briefing on Progress in Sickle Cell Disease Treatment & Policy Implications](https://sicklecelldisease.org/uncategorized/congressional-briefing-on-progress-in-sickle-cell-disease-treatment-policy-implications/) - TUESDAY, JUNE 18, 2019 | 2:30 – 3:30 PM DIRKSEN SENATE OFFICE BUILDING, ROOM G50 RSVP: Betsy Foss-Campbell, bfoss@asgct.org Join us for updates on Gene therapy approaches presented by prominent scientists in the field How policymakers can support the development of treatment options for sickle cell disease SPEAKERS Tim Scott, United States Senator Francesca Cook, MPH, Government
- [GBT Launches ACCEL Grants Program to Improve Access to Care for People with Sickle Cell Disease](https://sicklecelldisease.org/uncategorized/gbt-launches-accel-grants-program-to-improve-access-to-care-for-people-with-sickle-cell-disease/) - —The Access to Excellent Care for Sickle Cell Patients Pilot Program (ACCEL) Supports Novel Projects Aimed at Improving Access to High-Quality Healthcare for People with Sickle Cell Disease— —GBT Will Fund Proposals With the Highest Potential to Impact Patient Care— SOUTH SAN FRANCISCO, Calif. – Feb. 19, 2019 – Global Blood Therapeutics, Inc. (GBT) (NASDAQ: GBT) today announced
- [Black History Month 2026: Dr. Marilyn Hughes Gaston](https://sicklecelldisease.org/uncategorized/black-history-month-2026-dr-marilyn-hughes-gaston/) - This week, meet Dr. Marilyn Hughes Gaston, whose dedication and passion for health care led her to pave the way for equity. Dr. Gaston’s special focus on sickle cell disease helped shape our understanding of the condition and its management.
- [Black History Month 2026: Dr. Angella Ferguson](https://sicklecelldisease.org/uncategorized/black-history-month-2025-dr-angella-ferguson/) - Our first 2025 Black History Month #SCDHistoryHighlight features Dr. Angella D. Ferguson, a pediatrician and SCD pioneer who recently passed away at the age of 100.
- [Out Now: SCDAA 2025 Impact Report](https://sicklecelldisease.org/news/out-now-scdaa-2025-impact-report/) - 2025 was a year like no other. Discover our impact, learn more about our events and initiatives and reflect on the progress we made together in our Impact Report.
- [SCDAA Earns 2025 Candid Gold Seal of Transparency](https://sicklecelldisease.org/uncategorized/scdaa-earns-2025-candid-gold-seal-of-transparency/) - SCDAA is proud to announce that we have earned a 2025 Candid Gold Seal of Transparency! This recognition demonstrates our commitment to trust and clarity. We encourage you to view our profile to learn more about our impact.
- [MARAC Statement: L-glutamine is an Effective Therapy for SCD](https://sicklecelldisease.org/marac-statement/marac-statement-l-glutamine-is-an-effective-therapy-for-scd/) - The Sickle Cell Disease Association of America, Inc. (SCDAA) Medical and Research Advisory Committee (MARAC) has identified l-glutamine as an effective therapy for sickle cell disease (SCD). MARAC recommends that those living with sickle cell disease discuss l-glutamine as a potential treatment with their providers.
- [Congress Passes Government Funding Bill with Big Wins for the SCD Community](https://sicklecelldisease.org/advocacy/congress-passes-government-funding-bill-with-big-wins-for-the-scd-community/) - Today, the House of Representatives passed a package of bills providing funding for government programs for fiscal year (FY) 2026, which runs through September 30, 2026. The President is expected to quickly sign the bill into law. All three federal sickle cell disease programs were maintained with the same funding levels as years prior. This includes:
- [Preparing for Medicaid Changes](https://sicklecelldisease.org/advocacy/preparing-for-medicaid-changes/) - On July 4, 2025, President Trump signed into law a bill that cuts $1 trillion from the Medicaid program and makes sweeping changes to eligibility, enrollment processes and more. The new requirements don’t go into effect immediately – but we know they are coming. Here are some steps you can take to protect your Medicaid coverage now and, in the future, as the new requirements go into effect.
- [SCDAA Receives the ASH Outstanding Service Award](https://sicklecelldisease.org/news/scdaa-receives-the-ash-outstanding-service-award/) - SCDAA was honored to receive the Outstanding Service Award during the American Society of Hematology’s 67th ASH Annual Meeting and Exposition.
- [SCDAA names Folk-Nagua to board](https://sicklecelldisease.org/news/scdaa-names-folk-nagua-to-board/) - The Sickle Cell Disease Association of America Inc., a national nonprofit membership organization that advocates for people affected by sickle cell disease, named Krystal Folk-Nagua to the association’s board of directors. Folk-Nagua brings experience as a social work leader, advocate and individual living with sickle cell disease.
- [MARAC Statement: Vaccinations](https://sicklecelldisease.org/marac-statement/marac-statement-vaccinations/) - Recent news and discussion about vaccinations can be confusing to the sickle cell community. SCDAA’s Medical and Research Advisory Committee (MARAC) strongly encourages those living with sickle cell disease to discuss vaccinations with their providers and to keep their vaccinations updated.
- [DECEMBER 2025 LEGISLATIVE BRIEFING](https://sicklecelldisease.org/advocacy/december-2025-legislative-briefing/) - 2025 brought sweeping changes to the political environment at an intensely quick pace, including many shifts which impact the sickle cell disease community. Along with these challenges, we also saw new opportunities for the sickle cell disease community to stand together.
- [SCDAA Response to National Academies Release of Final Report on Sickle Cell Disease and Social Security Disability Evaluations](https://sicklecelldisease.org/advocacy/scdaa-response-to-national-academies-release-of-final-report-on-sickle-cell-disease-and-social-security-disability-evaluations/) - On December 9, 2025, the National Academies of Sciences, Engineering, and Medicine (NASEM), released the second and final Sickle Cell Disease in Social Security....
- [SEPTEMBER 2025 LEGISLATIVE BRIEFING](https://sicklecelldisease.org/advocacy/september-2025-legislative-briefing/) - SEPTEMBER 2025 LEGISLATIVE BRIEFING
- [JUNE LEGISLATIVE BRIEFING](https://sicklecelldisease.org/advocacy/june-legislative-briefing/) - SCDAA’s in-person Advocacy Days were a huge success! On May 8 and 9, representatives from 13 SCDAA member organizations across 11 different states traveled to Washington, D.C., to meet with members of Congress and their staff to talk about issues impacting the SCD community.
- [MARCH LEGISLATIVE BRIEFING](https://sicklecelldisease.org/advocacy/legislative-briefing/) - For those who have registered to participate in SCDAA’s Advocacy Day, which will be in person in Washington, DC, May 8-9, 2024, we thank you. We are excited to have you join us as we walk the halls to talk with federal legislators about issues important to the SCD community.
- [OCTOBER LEGISLATIVE BRIEFING](https://sicklecelldisease.org/advocacy/october-legislative-briefing/) - The Senate and the House of Representatives recently introduced resolutions expressing support for the designation of September 2024 as Sickle Cell Disease Awareness Month. In the Senate, the resolution was led by Senators Tim Scott (R-SC) and Cory Booker (D-NJ) along with 10 bipartisan Senators.
- [MARAC Statement: Pfizer Inclacumab Announcement](https://sicklecelldisease.org/news/marac-statement-pfizer-inclacumab-announcement/) - In a statement issued today, Pfizer announced the results of their Phase 3 THRIVE-131 study evaluating inclacumab. Although inclacumab was generally well tolerated in THRIVE-131, the study results concluded that inclacumab “did not meet its primary endpoint of significant reduction in the rate of vaso-occlusive crises (VOCs) in participants receiving inclacumab versus placebo every 12 weeks.”
- [SCDAA’s CHW Training Program Accredited by Maryland](https://sicklecelldisease.org/news/scdaas-chw-training-program-accredited-by-maryland/) - Exciting News: the Maryland Department of Health has officially accredited SCDAA’s Community Health Worker Training! This accolade will allow our program to have an even bigger impact in the state. Students who have successfully completed our training program can now apply for CHW certification with the Maryland Department of Health. Congrats to our CHW team on this accomplishment!
- [P.O.W.E.R. CHW Award Nominations are Now Open!](https://sicklecelldisease.org/news/p-o-w-e-r-chw-award-nominations-are-now-open/) - Each year during the SCDAA Annual National Convention, we recognize the amazing work performed by community health workers (CHWs) with the SCDAA P.O.W.E.R. CHW Award.
- [CMS Expands Access to the CGT Access Model](https://sicklecelldisease.org/news/cms-expands-access-to-the-cgt-access-model/) - On July 15, 2025, the Centers for Medicare & Medicaid Services (CMS) announced expansions to the Cell and Gene Therapy (CGT) Access Model.
- [SCDAA Statement on the Federal Budget Bill](https://sicklecelldisease.org/news/scdaa-statement-on-the-federal-budget-bill/) - On July 4, President Trump signed the One Big Beautiful Bill Act into law. SCDAA shares the concerns of many in our SCD community regarding the impact that this act will have on the Medicaid program,
- [Emmaus Life Sciences Launches Its Commercial Co-Payment Assistance Program for Endari™](https://sicklecelldisease.org/uncategorized/emmaus-life-sciences-launches-its-commercial-co-payment-assistance-program-for-endari/) - TORRANCE, Calif., Jan. 28, 2019 /PRNewswire/ — Emmaus Life Sciences, Inc. (Emmaus), a leader in sickle cell disease treatment, announced today that it will provide financial assistance to help eligible patients afford their monthly co-payment for Endari™ (L-glutamine oral powder) [1] . The program is limited to financially eligible patients covered by commercial insurance. A significant
- [Dr. Doris Wethers Blazed a Trail for Newborn Testing for Sickle Cell Disease](https://sicklecelldisease.org/uncategorized/dr-doris-wethers-blazed-a-trail-for-newborn-testing-for-sickle-cell-disease/) - Sickle Cell Disease Association of America, Inc. (SCDAA) celebrates the life and work of Dr. Doris L. Wethers who died at the age of 91 on January 28, 2019. Dr. Wethers’ research and advocacy efforts helped lead to mandatory testing of all newborns for sickle cell disease. She broke racial barriers in the medical world when she became the first black chief of
- [Charles F. Whitten: Black History Month SCD Pioneers 2019](https://sicklecelldisease.org/uncategorized/charles-f-whitten-black-history-month-scd-pioneers-2019/) - Dr. Charles F. Whitten: A Physician. Medical pioneer. Founder and President Emeritus of the Sickle Cell Disease Association of America, Inc. Dr. Charles F. Whitten was a physician, a medical pioneer and the founder and president emeritus of the Sickle Cell Disease Association of America, Inc. (SCDAA). His dedication and commitment to SCDAA and to those with sickle cell disease
- [Jordin Sparks Discusses the Emotional and Social Impact of Sickle Cell Disease](https://sicklecelldisease.org/uncategorized/jordin-sparks-increases-awareness-about-sickle-cell-disease-2/) - Jordin Sparks is a Grammy-nominated, multi-platinum recording artist, but she also wants to spark a conversation about the emotional and social impact of sickle cell disease. Sickle Cell Disease Association of America, Inc. thanks Jordin Sparks, for your commitment to increasing awareness about sickle cell disease! Click here to read an article featuring Generation S spokesperson, Jordin
- [Texas State Representative Jarvis Johnson Files Four Sickle Cell Disease Related Bills](https://sicklecelldisease.org/advocacy/texas-state-representative-jarvis-johnson-files-four-sickle-cell-disease-related-bills/) - Sickle Cell Association of Houston has been working on new state legislation in Texas, and on March 6, 2019, State Representative Jarvis Johnson filed four bills that will raise awareness, create a grant program, and improve the lives of those living with sickle cell disease in Texas. “Sickle Cell is too often a forgotten illness,
- [National Family, Patient, Public Sector, and  Multi-employer Groups Join Effort to Protect Health Care Coverage](https://sicklecelldisease.org/uncategorized/national-family-patient-public-sector-and-multi-employer-groups-join-effort-to-protect-health-care-coverage/) - The Alliance to Fight the 40 | Don’t Tax My Health Care, a broad-based coalition committed to repealing the 40 percent tax on employer-provided health benefits welcomes Families USA, Public Sector HealthCare Roundtable, the National Coordinating Committee for Multi-employer Plans (NCCMP), and the Sickle Cell Disease Association of America in the effort to protect the
- [GBT Awards More than $200,000 in Grants to Five Nonprofit Organizations through New ACCEL Program Aimed at Improving Access to Healthcare for People Living with Sickle Cell Disease](https://sicklecelldisease.org/uncategorized/gbt-awards-more-than-200000-in-grants-to-five-nonprofit-organizations-through-new-accel-program-aimed-at-improving-access-to-healthcare-for-people-living-with-sickle-cell-disease/) - Innovative Healthcare Programs for Sickle Cell Community On June 10, 2019, Global Blood Therapeutics, Inc. (GBT) (NASDAQ: GBT) announced that five nonprofit organizations have been awarded more than $200,000 in grants through the company’s new Access to Excellent Care for Sickle Cell Patients Pilot Program (ACCEL). Five grant recipients – the Center for Comprehensive Care
- [Shine the Light on Sickle Cell” Campaign Celebrates the  10th Anniversary of World Sickle Cell Awareness Day](https://sicklecelldisease.org/uncategorized/shine-the-light-on-sickle-cell-campaign-celebrates-the-10th-anniversary-of-world-sickle-cell-awareness-day/) - SiNERGe and Sickle Cell Disease Association of America, Inc. (SCDAA) are collaborating with sickle cell advocacy groups, community-based organizations, hospitals, governments and other key stakeholders in the sickle cell community on Shine the Light on Sickle Cell, a 24-hour awareness campaign to celebrate the 10th anniversary of World Sickle Cell Awareness Day on June 19,
- [Novartis Unveils "The Untold Stories of Sickle Cell Disease," a worldwide patient story project.](https://sicklecelldisease.org/uncategorized/novartis-unveils-the-untold-stories-of-sickle-cell-disease-a-worldwide-patient-story-project/) - On June 19, 2019, for World Sickle Cell Awareness Day, Novartis unveiled “The Untold Stories of Sickle Cell Disease,” a worldwide patient story project. This unique program offers a powerful glimpse into the lives of people touched by sickle cell disease – how it affects their lives and how they work to overcome it. You
- [BLACKDOCTOR.ORG is a New Media Partner of the  Sickle Cell Disease Association of America, Inc.](https://sicklecelldisease.org/uncategorized/blackdoctor-org-is-a-new-media-partner-of-the-sickle-cell-disease-association-of-america-inc/) - New National Media Partnership Will Enhance Awareness Efforts and Increase Awareness about Sickle Cell Disease and Sickle Cell Trait Sickle Cell Disease Association of America, Inc. (SCDAA) and BLACKDOCTOR.ORG are proud to announce a new media partnership that will enhance national awareness efforts about sickle cell disease (SCD). The partnership will use digital platforms, events and
- [GBT and Advocates Launch Disease Awareness Campaign Focused on Breaking Down Stigmas Associated with Sickle Cell Disease](https://sicklecelldisease.org/uncategorized/gbt-and-advocates-launch-disease-awareness-campaign-focused-on-breaking-down-stigmas-associated-with-sickle-cell-disease/) - Company Also Launches Disease Awareness Campaign to Raise Awareness Among Physicians About the Silent Damage Caused by Sickle Cell Disease Global Blood Therapeutics, Inc. (GBT) (NASDAQ: GBT), in partnership with sickle cell community-based organizations (CBOs), today announced the launch of Sickle Cell Speaks, a national campaign focused on breaking down stigmas associated with sickle cell
- [SCDAA Partners with The Pain Community to Support the Sickle Cell Community by Providing Comprehensive Integrative Pain Management Educational Information](https://sicklecelldisease.org/uncategorized/scdaa-partners-with-the-pain-community-to-support-the-sickle-cell-community-by-providing-comprehensive-integrative-pain-management-educational-information/) - Sickle Cell Disease Association of America, Inc. (SCDAA) and The Pain Community are proud to announce a new partnership that will increase education and awareness information about comprehensive integrative pain management and wellness to support individuals living with sickle cell disease (SCD) and their family members. The partnership will use digital platforms and other collateral
- [SCDAA Forms International Media Partnership to Spread SCD Awareness](https://sicklecelldisease.org/uncategorized/scdaa-forms-international-media-partnership-to-spread-scd-awareness/) - New International Media Partnership Will Enhance Awareness Efforts and Increase Awareness about Sickle Cell Disease and Sickle Cell Trait Sickle Cell Disease Association of America, Inc. (SCDAA) and the African Sickle Cell News & World Report are proud to announce a new international media partnership that will enhance global awareness efforts about sickle cell disease
- [GBT and SCDAA to Host 8th Annual Sickle Cell Disease (SCD) Therapeutics Conference](https://sicklecelldisease.org/uncategorized/gbt-and-scdaa-to-host-8th-annual-sickle-cell-disease-scd-therapeutics-conference/) - GlobalBlood Therapeutics, Inc. (GBT) (NASDAQ: GBT) and the Sickle Cell Disease Association of America, Inc. (SCDAA) announced that they will host the 8th Annual Sickle Cell Disease (SCD) Therapeutics Conference on Tuesday, September 10, 2019, at The Westin Washington, D.C. U.S. Representative Robin Kelly, chair of the Congressional Black Caucus Health Braintrust, will deliver the
- [Novartis Adakveo approved by FDA for Sickle Cell Disease](https://sicklecelldisease.org/uncategorized/novartis-adakveo-approved-by-fda-for-sickle-cell-disease/) - New Novartis medicine Adakveo® (crizanlizumab-tmca) approved by FDA to reduce frequency of pain crises in individuals living with sickle cell disease Sickle cell pain crises are unpredictable, severe events associated with life-threatening complications1 Adakveo reduced the annual rate of sickle cell pain crises by 45% compared to placebo (1.63 vs 2.98) and the annual rate of
- [CRISPR Therapeutics and Vertex Announce Positive Safety and Efficacy Data](https://sicklecelldisease.org/news/crispr-therapeutics-and-vertex-announce-positive-safety-and-efficacy-data/) - Nov 19, 2019 CRISPR Therapeutics and Vertex Announce Positive Safety and Efficacy Data From First Two Patients Treated With Investigational CRISPR/Cas9 Gene-Editing Therapy CTX001® for Severe Hemoglobinopathies -Two patients treated with CTX001 successfully engrafted and demonstrated an initial safety profile consistent with myeloablative busulfan conditioning and autologous hematopoietic stem cell transplant- -Beta thalassemia: Patient is
- [GBT’s Oxbryta™ (voxelotor) tablets is approved for the treatment of sickle cell disease](https://sicklecelldisease.org/news/gbts-oxbryta-voxelotor-tablets-is-approved-for-the-treatment-of-sickle-cell-disease/) - Oxbryta™ (voxelotor) tablets Now Approved On behalf of GBT, we are happy to share that Oxbryta (pronounced ox-brye-ta) is now approved by the U.S. Food and Drug Administration (FDA). Oxbryta is a prescription medicine used for the treatment of sickle cell disease in adults and children 12 years of age and older.1 It is not
- [ASH and FDA Unveil New Recommendations to Guide Clinical Development of Sickle Cell Disease Therapies](https://sicklecelldisease.org/news/ash-and-fda-unveil-new-recommendations-to-guide-clinical-development-of-sickle-cell-disease-therapies/) - Joint FDA/ASH Led Initiative Highlights Importance of Using Patient Reported Outcomes and Biomarkers in Clinical Trials to Advance SCD Therapies (WASHINGTON, DC, Dec. 6, 2019) — The American Society of Hematology (ASH) today released the most comprehensive set of recommendations to date aimed at establishing uniformity and global standards for clinical trial endpoints used to
- [NEW - Health Alert for People with Sickle Cell Disease and their Caregivers](https://sicklecelldisease.org/news/health-alert-for-patients-and-caregivers/) - DOWNLOAD PATIENT PDF (Spanish Version) DOWNLOAD PATIENT SUB-SAHARAN AFRICAN PDF SHOW THIS TO YOUR MEDICAL PROVIDERS TO HELP THEM HELP YOU. This document will be updated as more information becomes available. May 27, 2020 – COVID-19, the coronavirus disease of 2019 – also known as Coronavirus-2 (also called SARS-CoV-2) – and the illness it
- [NEW - Sickle Cell Disease and COVID-19: Provider Advisory](https://sicklecelldisease.org/news/sickle-cell-disease-and-covid-19-provider-directory/) - Download Provider Advisory Download Sub-Saharan African Provider Advisory An Outline to Decrease Burden and Minimize Morbidity This document will be updated as data and evidence emerge. May 27, 2020 – Sickle cell disease (SCD) affects 100,000 individuals in the United States and millions globally. Individuals living with SCD suffer from both acute and chronic complications
- [Sickle Cell Disease Association of America Partners with HealthWell Foundation](https://sicklecelldisease.org/news/sickle-cell-disease-association-of-america-partners-with-healthwell-foundation/) - New Fund Launches to Provide Financial Assistance to People with Sickle Cell Disease Copayment and Premium Assistance Now Available (April 15, 2020 – Hanover, MD) – The Sickle Cell Disease Association of America is proud to announce its partnership with the HealthWell Foundation®, an independent non-profit that provides a financial lifeline for inadequately insured Americans.
- [Sickle Cell Disease Association holds 48th annual national convention virtually](https://sicklecelldisease.org/news/sickle-cell-disease-association-holds-48th-annual-national-convention-virtually/) - Sickle Cell Disease Association of America will hold its 48th annual national convention virtually this year from Tuesday, Oct. 13, through Saturday, Oct. 17. The four-day multidisciplinary convention addressing sickle cell disease and sickle cell trait draws hundreds of health care professionals, patients, families, community-based organizations, leaders and advocates. “Our lineup of world-class speakers will
- [Sickle Cell Disease Association of America and Aruvant Sciences Forge New Partnership to Educate Around Gene Therapy](https://sicklecelldisease.org/news/sickle-cell-disease-association-of-america-and-aruvant-sciences-forge-new-partnership-to-educate-around-gene-therapy/) - The Sickle Cell Disease Association of America (SCDAA) and Aruvant Sciences are proud to announce a new partnership to create educational programs to increase awareness of gene therapy as a potential curative treatment option for sickle cell disease patients. This collaboration will help SCDAA continue to deliver on its mission, while assisting Aruvant in learning
- [MARAC Advisory Statement: COVID-19 Vaccines](https://sicklecelldisease.org/news/marac-advisory-statement-covid-19-vaccines/) - Download the MARAC Alert | Download Spanish Translation | Download French Translation December 14, 2020 – News is evolving rapidly about COVID-19 and COVID-19 vaccines. Early results from the COVID-19 vaccine trials are very promising, although the true benefits and risks will not be known until a larger number of people receive the vaccine. The
- [SCDAA promotes Kevin Amado Jr.](https://sicklecelldisease.org/uncategorized/sickle-cell-disease-association-of-america-promotes-kevin-amado-jr/) - Sickle Cell Disease Association of America promoted Kevin Amado Jr. to community impact and engagement manager. Amado joined the association last year with 16 years of experience as a health educator, case manager, community health worker and certified health insurance navigator. As community impact and engagement manager, Amado will develop and implement community health worker
- [Statement from SCDAA MARAC](https://sicklecelldisease.org/news/statement-from-scdaa-marac/) - February 16, 2021 – We are aware of the announcement today from bluebird bio regarding the temporary suspension of the clinical trials of its LentiGlobin Gene Therapy for Sickle Cell Disease (bb1111). We have investigated the situation, and we have met with bluebird bio to discuss the information available to the public. MARAC is monitoring
- [SCDAA Launches New Educational Materials to Support Children’s Blood Transfusion](https://sicklecelldisease.org/news/sickle-cell-disease-association-of-america-inc-launches-new-educational-materials-to-support-childrens-blood-transfusion/) - Sickle Cell Disease Association of America, Inc. (SCDAA) and Hemanext Inc., a privately held medical technology company dedicated to improving the quality, safety, efficacy and cost of red blood cell (RBC) transfusion therapy, today announced the launch of new educational material to help SCDAA deliver on its mission and meet its goals. Hemanext has sponsored
- [SCDAA partners with Sickle Cell Community Consortium](https://sicklecelldisease.org/news/scdaa-partners-with-sickle-cell-community-consortium/) - Sickle Cell Disease Association of America partnered with the Sickle Cell Community Consortium to advocate for legislation benefiting people with sickle cell disease and their families. The partnership includes collaboration on the association’s annual advocacy day initiatives, meetings and trainings and in developing federal legislative priorities. “Sickle Cell Disease Association of America and the Sickle
- [GBT and SCDAA Kick Off “Lift Every Voice to Shine the Light on Sickle Cell”](https://sicklecelldisease.org/news/gbt-and-sickle-cell-disease-association-of-america-kick-off-lift-every-voice-to-shine-the-light-on-sickle-cell-spoken-word-contest-in-honor-of-world-sickle-cell-day-2021/) - May 04, 2021 at 8:00 AM EDT SOUTH SAN FRANCISCO, Calif. and HANOVER, Md., May 04, 2021 (GLOBE NEWSWIRE) —In recognition of World Sickle Cell Day, which falls on June 19, 2021,Global Blood Therapeutics, Inc. (GBT) (NASDAQ: GBT) and the Sickle Cell Disease Association of America, Inc. (SCDAA) today launched “Lift Every Voice to Shine
- [Walk with the Stars to support Sickle Cell Disease Association of America](https://sicklecelldisease.org/uncategorized/walk-with-the-stars-to-support-sickle-cell-disease-association-of-america/) - Sickle Cell Disease Association of America will hold the eighth annual Walk with the Stars fundraiser, where participating teams and individuals can track their walk, run, dance or movement steps while raising funds to support the association in preventing the complications of sickle cell disease through awareness, education, advocacy and research. Walk with the Stars
- [The Hibiscus Study is Enrolling Volunteers](https://sicklecelldisease.org/uncategorized/the-hibiscus-study-is-enrolling-volunteers/) - Study Title: An adaptive, randomized, placebo-controlled, double-blind, multi-center study of oral FT-4202, a pyruvate kinase activator, in patients with sickle cell disease (SCD). Study Description: The Hibiscus Study™ is evaluating the safety and effectiveness of an investigational medication compared with placebo (inactive drug) in people 12 to 65 years of age with SCD. The study
- [The Kidney Cancer Association and SCDAA launch KNOW & TELL](https://sicklecelldisease.org/news/the-kidney-cancer-association-and-scdaa-launch-know-tell/) - New campaign to raise awareness about connection between sickle cell trait and deadly form of kidney cancer. The Kidney Cancer Association (KCA) and the Sickle Cell Disease Association of America, Inc. (SCDAA) are partnering to launch the “KNOW & TELL” initiative today to raise awareness about sickle cell trait (SCT) and its link to a
- [HCPLive® Announces Partnership With Sickle Cell Disease Association of America (SCDAA)](https://sicklecelldisease.org/uncategorized/hcplive-announces-partnership-with-sickle-cell-disease-association-of-america-scdaa/) - HCPLive® Announces Partnership With Sickle Cell Disease Association of America (SCDAA) SCDAA’s mission is to advocate for people affected by sickle cell conditions and empower community-based organizations to raise awareness and maximize patient quality of life. (CRANBURY, N.J. – September 7, 2021) – HCPLive®, a multimedia platform dedicated to providing physicians with up-to-date specialty and disease-specific information to help them offer the
- [GBT and Sickle Cell Disease Association of America to Host 10th Annual Sickle Cell Disease (SCD) Therapeutics Conference](https://sicklecelldisease.org/news/gbt-and-sickle-cell-disease-association-of-america-to-host-10th-annual-sickle-cell-disease-scd-therapeutics-conference/) - Centers for Medicare & Medicaid Services (CMS) Administrator Chiquita Brooks-LaSure to deliver keynote SOUTH SAN FRANCISCO, Calif., and BALTIMORE – September 8, 2021 – Global Blood Therapeutics, Inc. (GBT) (NASDAQ: GBT) and the Sickle Cell Disease Association of America, Inc. (SCDAA) will host the 10th Annual Sickle Cell Disease (SCD) Therapeutics Conference on Wednesday, September 15th. The virtual conference, which takes
- [SCDAA holds 49th annual national convention virtually](https://sicklecelldisease.org/news/scdaa-holds-49th-annual-national-convention-virtually/) - The Sickle Cell Disease Association of America will hold its 49th annual national convention virtually this year from Tuesday, Oct. 12, through Saturday, Oct. 16. The five-day multidisciplinary convention addressing sickle cell disease and sickle cell trait draws hundreds of health care professionals, patients, families, community-based organizations, leaders and advocates. “Our lineup of world-class speakers
- [SCDAA launches clinical trial finder](https://sicklecelldisease.org/news/scdaa-launches-clinical-trial-finder/) - HANOVER, Md.—The Sickle Cell Disease Association of America launched a sickle cell disease clinical trial finder, a centralized, simple-to-navigate website to help people with sickle cell disease, their families and caregivers find clinical trials. Clinical trials help pharmaceutical companies collect data about the effectiveness and safety of sickle cell disease treatments and can provide participants
- [SCDAA News Advisory: Salmonella and Sickle Cell Disease](https://sicklecelldisease.org/news/scdaa-news-advisory-salmonella-and-sickle-cell-disease/) - Over the past few months, more than 1,000 people in the U.S.A. and Canada were infected with a bacteria called Salmonella. The Centers for Disease Control and Prevention investigation can be read here. “… red onions from Thomson International Inc., were the likely source of the outbreak. Other onion types (such as white, yellow, or
- [SCDAA News Advisory: Partial Hold on Gene Therapy Trial](https://sicklecelldisease.org/marac-statement/scdaa-news-advisory-partial-hold-on-gene-therapy-trial/) - On December 20, the FDA placed a partial hold on bluebird bio’s clinical program for lovotibeglogene autotemcel (lovo-cel) gene therapy, temporarily stopping testing on study volunteers under age 18. This partial hold was a response to the investigation of one adolescent with sickle cell disease who has persistent anemia (not dependent on transfusion) a year
- [MARAC Advisory Statement: Update About COVID-19](https://sicklecelldisease.org/marac-statement/marac-advisory-statement-update-about-covid-19/) - December 23, 2021 – The Sickle Cell Disease Association of America’s Medical and Research Advisory Committee reminds the sickle cell community that the COVID-19 pandemic is having another increase in infections. New variants like omicron are emerging, as are common for RNA viruses, and vaccination rates need to consequently improve. Vaccinations can protect against severe
- [SCDAA Celebrates Black History Month: Miles Davis](https://sicklecelldisease.org/uncategorized/scdaa-celebrates-black-history-month-miles-davies/) - Happy Black History Month! Sickle cell can be painful and hard to manage, but it doesn’t need to stop you from following your dreams. This month, we’ll share the inspirational stories of household names and notable figures who didn’t let sickle cell hold them back. We kick off our celebration recognizing world-renowned jazz artist Miles
- [SCDAA Celebrates Black History Month: Billy Garrett, Jr.](https://sicklecelldisease.org/uncategorized/scdaa-celebrates-black-history-month-billy-garrett-jr/) - Happy Black History Month! Sickle cell can be painful and hard to manage, but it doesn’t need to stop you from following your dreams. This month, we’ll share the inspirational stories of household names and notable figures who didn’t let sickle cell hold them back. Meet Billy Garrett Jr., the first known person with sickle
- [SCDAA Celebrates Black History Month: Paul Williams](https://sicklecelldisease.org/uncategorized/scdaa-celebrates-black-history-month-paul-williams/) - Meet Paul Williams, one of the founding members of the legendary Motown group The Temptations. Williams began singing as a kid with Eddie Kendricks in their church choir in Birmingham, Alabama. The two pursued music careers as members of various groups, eventually moving to Detroit to join Otis Williams, Melvin Franklin and Elbridge Bryant as
- [SCDAA Celebrate Black History Month: Prodigy](https://sicklecelldisease.org/uncategorized/scdaa-celebrate-black-history-month-prodigy/) - Our final #BlackHistoryMonth highlight is dedicated to rapper and sickle cell warrior Albert “Prodigy” Johnson, one-half of the iconic 90’s rap duo Mobb Deep. Prodigy was born in the 1970s to a family of musicians and was diagnosed with sickle cell SS at three months old. He grew up in Queens, New York City, and
- [SCDAA partners with Phi Beta Sigma Fraternity](https://sicklecelldisease.org/uncategorized/scdaa-partners-with-phi-beta-sigma-fraternity/) - The Sickle Cell Disease Association of America (SCDAA) partnered with Phi Beta Sigma Fraternity Inc. to increase awareness about sickle cell disease and raise funds to support education about the negative effects of sickle cell disease on the physical, economic and social well-being of individuals with the condition. “SCDAA is excited to again partner with
- [MARAC Advisory: COVID-19 and Sickle Cell Disease](https://sicklecelldisease.org/marac-statement/marac-advisory-covid-19-and-sickle-cell-disease/) - March 2022 – The Sickle Cell Disease Association of America’s Medical and Research Advisory Committee notes that news about COVID-19 continues to emerge. Monitor your state or local health department for more information. Below are some updates and suggestions for individuals with sickle cell disease. Several studies have examined the effects of COVID-19 infection in
- [SCDAA recognized for leadership](https://sicklecelldisease.org/news/sickle-cell-disease-association-of-america-recognized-for-leadership/) - The Sickle Cell Disease Association of America received the Abbey S. Meyers Leadership Award from the National Organization for Rare Disorders. The annual award honors organizations that serve members with strong leadership in advocacy and education. “We’re grateful for the recognition at the Sickle Cell Disease Association of America,” said Regina Hartfield, president and CEO
- [SCDAA Releases Comments on the CDC's Opioid Guidelines](https://sicklecelldisease.org/news/scdaa-releases-comments-on-the-cdcs-opioid-guidelines/) - The Centers for Disease Control and Prevention (CDC) recently drafted an update to its guidelines for prescribing opioids and reached out to SCDAA for feedback. After decades of misinformation, poor guidance and systemic racism, which have created barriers for SCD patients to receive adequate care for pain, we urge the CDC to go further to
- [SCDAA names chief financial officer](https://sicklecelldisease.org/uncategorized/scdaa-names-chief-financial-officer/) - The Sickle Cell Disease Association of America named Reginald Hart Jr. as chief financial officer. Hart brings more than 20 years of experience in executive leadership, business management, strategic planning, financial operations, contracting and cost control. Prior to joining the Sickle Cell Disease Association of America, Hart managed business finance and operations for AARP’s Legal
- [SCDAA Joins the Newly Formed Sickle Cell Disease Partnership](https://sicklecelldisease.org/news/scdaa-joins-the-newly-formed-sickle-cell-disease-partnership/) - Partnership Calls on Policymakers to Implement Proposals in 2020 Landmark Report Today, in recognition of World Sickle Cell Day on June 19th, the Sickle Cell Disease Association of America announced it has joined the newly formed Sickle Cell Disease Partnership. The Partnership is comprised of 15 organizations representing a diverse cross-section of patient advocates, health care providers,
- [Sickle Cell Care Expansion Act Introduced to the Senate](https://sicklecelldisease.org/news/sickle-cell-care-expansion-act-introduced-to-the-senate/) - Ahead of World Sickle Cell Awareness Day on June 19, U.S. Senators Chris Van Hollen (D-Md.) and Cory Booker (D-N.J.) introduced the Sickle Cell Care Expansion Act to improve access to medical treatment and quality of life for people suffering from Sickle Cell Disease (SCD). This bill, which complements legislation introduced earlier this year by
- [The Passing of Dr. Samir Ballas](https://sicklecelldisease.org/news/the-passing-of-dr-samir-ballas/) - SCDAA regrets to announce that Dr. Samir Ballas passed away on August 12. He was devoted to caring for adults with sickle cell in Philadelphia at Thomas Jefferson University. He made many significant contributions to clinical research on sickle cell pain and lab research on sickle cell shape changes. Read the letter from his daughter
- [Urge Officials to Cosponsor the SCD Comprehensive Care Act](https://sicklecelldisease.org/news/urge-officials-to-cosponsor-the-scd-comprehensive-care-act/) - Dear Sickle Cell Community, Over the past several months, SCDAA has been working with congressional sickle cell disease (SCD) champions and other community and provider groups to advance bipartisan legislation to improve care for individuals with SCD. The Sickle Cell Disease Comprehensive Care Act (H.R. 6216 / S. 3389) authorizes the Centers for Medicare and
- [Member Organization Sickle Cell Awareness Month Events 2022](https://sicklecelldisease.org/uncategorized/member-organization-sickle-cell-awareness-month-events-2022/) - Join an SCDAA member organization at one of these great events this September! The Amazing Race 5K/1K | Starts September 1 | Virtual Hosted by Sickle Cell Houston Virtual Walk Across Texas | September 3 | Virtual Hosted by the Sickle Cell Association of Texas Marc Thomas Foundation National Sickle Cell Month Press Conference | September 6 |
- [Tools for Sickle Cell Awareness Month You Don’t Want to Miss](https://sicklecelldisease.org/uncategorized/tools-for-sickle-cell-awareness-month-you-dont-want-to-miss/) - September is Sickle Cell Awareness Month. Check out these helpful tools and learn more about how to support sickle cell warriors! For Schools https://www.chop.edu/health-resources/sickle-cell-school-outreach For Employers https://askjan.org/disabilities/Sickle-Cell-Anemia.cfm https://askjan.org/publications/Disability-Downloads.cfm?pubid=969229&action=download&pubtype=pdf For Emergency Medicine https://www.acep.org/patient-care/sickle-cell/ For Hospitalists https://www.hospitalmedicine.org/clinical-topics/sickle-cell-disease/Sickle-Cell-Implementation-Form/ For Blood Transfusion https://www.cdc.gov/ncbddd/sicklecell/betterhealthtoolkit/blood-transfusions.html About Sickle Cell Trait https://www.cdc.gov/ncbddd/sicklecell/toolkit.html For Advocacy https://www.nationalacademies.org/news/2020/09/improving-health-outcomes-for-sickle-cell-disease-care-requires-comprehensive-team-based-care-new-payment-models-and-addressing-institutional-racism-in-health https://nichq.org/campaign/national-sickle-cell-awareness-month-2022 Looking for more? Visit oneSCDvoice’s Sickle Cell
- [New Publications Emphasize Inequities in Pediatric SCD Care](https://sicklecelldisease.org/uncategorized/new-publications-emphasize-inequities-in-pediatric-scd-care/) - This week, two new publications call attention to the barriers to care children with SCD face. Prioritizing Sickle Cell Disease, an article co-authored by SCDAA Chief Medical Officer Lewis Hsu for the American Academy of Pediatrics, is a call to action within the medical community to work together to maximize available screenings and treatments. The Centers for
- [Frequently Asked Questions about SCT in Newborn Screening](https://sicklecelldisease.org/uncategorized/frequently-asked-questions-about-sct-in-newborn-screening/) - Many people have questions about sickle cell trait after newborn screening. Dr. Lewis Hsu, SCDAA chief medical officer, answers some of the FAQs below. Can this test be wrong? The standard process for newborn screening is that a result showing sickle cell trait will be followed up with another blood test – so two tests
- [Midterm Election Outcomes and What they Mean for SCD](https://sicklecelldisease.org/uncategorized/midterm-election-outcomes-and-what-they-mean-for-scd-2/) - An update from John Otsuki, SCDAA government relations manager As I am sure you’re aware, the United States recently completed a midterm election. All members of the House of Representatives were up for election or re-election, as they are every 2 years, as were 34 Senators (roughly 1/3 of the total). Before the election, the
- [Sickle Cell is Not a Joke](https://sicklecelldisease.org/uncategorized/sickle-cell-is-not-a-joke/) - The Sickle Cell Disease Association of America, Inc., joins the Foundation For Sickle Cell Disease Research (FSCDR) in condemning the use of sickle cell disease (SCD) as a punchline on the HBO Max show Velma. For the over 100,000 Americans impacted by sickle cell and their families, this disease is anything but a laughing matter.
- [SCDAA to promote clinical trials](https://sicklecelldisease.org/news/scdaa-to-promote-clinical-trials/) - The Sickle Cell Disease Association of America, a national nonprofit membership organization that advocates for people affected by sickle cell, formed the Sickle Cell Disease C.A.R.E.S. Consortium, an initiative of pharmaceutical companies united to promote clinical trial participation and education. “We have an opportunity and a responsibility to change the perception of clinical trials and
- [SCDAA Announces FY24 Legislative Priorities](https://sicklecelldisease.org/news/scdaa-announces-fy24-legislative-priorities-2/) - Did you know that the federal government is poised to make some of the biggest decisions in sickle cell history right now? Current pending legislation would direct an unprecedented amount of funds to sickle cell treatment, research and support. Our FY24 Legislative Priorities, developed in collaboration with Sick Cells, outline these exciting bills and requests.
- [Afimmune joins the SCD C.A.R.E.S. Consortium](https://sicklecelldisease.org/news/afimmune-joins-the-scd-c-a-r-e-s-consortium-2/) - Dublin, Ireland, 19 June 2023: Afimmune, a clinical stage biopharmaceutical company developing novel rare disease therapeutics, today announced it has been invited to join the Sickle Cell Disease Association of America’s (SCDAA) Collaboration of Advocates for Research, Education and Science (C.A.R.E.S.) Consortium. The mission of this initiative is to raise awareness about the importance of clinical trials and why it can help sickle cell patients to participate in them. The SCDAA along with other participating strategic pharma partners came together to help educate sickle cell patients on the potential treatment options available and to encourage more clinical trial participation.
- [SCDAA Teams with MedicAlert Foundation](https://sicklecelldisease.org/news/scdaa-teams-with-medicalert-foundation/) - The Sickle Cell Disease Association of America, the leading patient organization for people with sickle cell disease, announced a pilot program with MedicAlert Foundation to enhance the safety and well-being of people living with sickle cell disease. More than 100,000 Americans live with sickle cell disease, a genetic blood disorder that affects red blood cells. Acute pain episodes known as sickle cell crises are one of the most common and debilitating symptoms of sickle cell disease. These crises can be unpredictable and extremely painful, lasting from a few hours to a few weeks. They’re the No. 1 reason people with sickle cell disease seek emergency treatment.
- [MARAC Statement: Crizanlizumab (Adakveo)](https://sicklecelldisease.org/marac-statement/marac-statement-crizanlizumab-adakveo/) - July 7, 2023 – SCDAA’s Medical and Research Advisory Committee (MARAC) notes that the European Medicines Agency’s (EMA) Committee for Medicinal Products for Human Use (CHMP) recommended on May 26, 2023, that the conditional marketing authorization for crizanlizumab (Adakveo) be revoked. The EMA stated that this revocation was triggered by the findings of the Novartis STAND multinational clinical trial showing no significant benefit of crizanlizumab over placebo in reducing pain or hospitalizations. Novartis reports that there were no safety problems in STAND. Abstract PB2512 submitted to the 2023 European Hematology Association reports no new safety issues in Novartis’ post-marketing surveillance of over 5,000 patient-treatment-years.
- [Abstracts Accepted Until 11:59 p.m. PST](https://sicklecelldisease.org/uncategorized/abstracts-accepted-until-1159-p-m-pst/) - This morning, we were notified that some users experienced issues using our 2023 National Abstract Competition portal. This issue has been remedied. SCDAA is accepting abstract submissions until 11:59 p.m. PST, July 17, 2023. If you tried to submit an abstract earlier today and encountered a problem, please click here to resubmit your work before the deadline. Thank you for your patience.
- [Sickle Cell Awareness Month 2023 Events](https://sicklecelldisease.org/news/sickle-cell-awareness-month-2023-events/) - All across the country, our member organizations are hosting exciting events for Sickle Cell Awareness Month this September. Check out the list below to find an event near you.
- [SCDAA and MedicAlert Foundation Launch Pilot Program](https://sicklecelldisease.org/uncategorized/scdaa-and-medicalert-foundation-launch-pilot-program/) - HANOVER, MD – Sickle Cell Disease Association of America (SCDAA), the leading national organization and voice for people with sickle cell disease (SCD), today launched a pilot program with MedicAlert Foundation to enhance the safety and well-being of people living with sickle cell disease (SCD). Acute pain episodes known as sickle cell crises are one of the most common and debilitating symptoms of SCD. These crises can be unpredictable and extremely painful, lasting from a few hours to a few weeks. They’re the number one reason people with SCD seek emergency treatment. However, SCD patients seeking treatment for a sickle cell crisis face hurdles to getting the care they need in the Emergency Department (ED). The goal of the pilot program is to improve access to timely, effective emergency care for people experiencing a sickle cell crisis.
- [MARAC Statement: Update About COVID](https://sicklecelldisease.org/marac-statement/marac-statement-update-about-covid/) - Sept. 16, 2023 – The worldwide pandemic of COVID-19 (SARS-CoV2) infections seem to have settled down, and we are now seeing waves of infections with new variants. As facemasks come off and isolation rules end, everybody has higher chances of catching other respiratory infections, such as RSV (respiratory syncytial virus) and influenza (flu). SCDAA’s Medical and Research Advisory Committee (MARAC) endorses a shared-decision-making process about vaccines and treatments but would like to offer unbiased information to help in the decision-making process. 1. MARAC recommends that individuals with sickle cell disease and members of their households get all immunizations as they become available. Immunizations generally reduce the risks of severe infection and hospitalization, both for the individual receiving the immunization and for the people around them.
- [MARAC Statement: Health Insurance Coverage for MSD SCT](https://sicklecelldisease.org/marac-statement/marac-statement-health-insurance-coverage-for-msd-sct/) - Hematopoietic stem cell transplant for sickle cell disease from HLA-matched sibling donor (MSD) after myeloablative conditioning has been proven as curative therapy for sickle cell disease for over 25 years. It is no longer considered an experimental procedure. Over 2,000 transplants have been performed successfully across the world from HLA-matched sibling donors. Pooled Overall Survival rates for children and adults are high at 97% and 98%, respectively (meta-analysis by Iqbal 2021). The outcomes in sickle cell disease are much better for younger ages, but outcomes can still be good for selected adults. MSD HCT is expensive, but multiple analyses have shown that long-term health care costs go down, quality of life improves and organ damage is usually slowed or stopped. This means that MSD HCT is very cost-effective for the family, the health care system and society in general (less than $50k per QALY). Therefore, it is logical for MSD HCT to be covered by health insurance.
- [CMO Speaks: Gene Therapy for SCD (Part 2)](https://sicklecelldisease.org/cmo-speaks/cmo-speaks-gene-therapy-for-scd-part-2/) - Welcome to CMO Speaks, a blog featuring the voices of SCDAA’s clinical leadership team. This is part two of a three-part series on gene therapy for sickle cell disease. Part two was written by Dr. Lewis Hsu. What comes up for you when you hear the words “gene therapy?” If it makes you feel overwhelmed, skeptical and/or confused, you’re not alone. There are a lot of misconceptions about gene therapy, and it can be hard to understand why it’s so important. Get some answers to frequently asked questions about gene therapy below!
- [New Opiate Dosing Calculator for Health Care Providers](https://sicklecelldisease.org/uncategorized/new-opioid-dosing-calculator-for-health-care-providers/) - NEW RESOURCE AVAILABLE: This tool from the National Alliance of Sickle Cell Centers can help sickle cell providers make important decisions about dosage when prescribing opiates. The calculator was developed was Paula Tanabe, RN, Ph.D., and Patricia Kavanagh, M.D., through a grant funded by the National Heart, Lung and Blood Institute.
- [CMO Speaks: Making ED Care Better for SCD - Progress in 2023](https://sicklecelldisease.org/cmo-speaks/cmo-speaks-making-ed-care-better-for-scd-progress-in-2023/) - Welcome to CMO Speaks, a blog featuring the voices of SCDAA’s clinical leadership team. This article was written by Dr. Lewis Hsu, SCDAA’s chief medical officer. The Emergency Department is no one’s favorite place, but unfortunately individuals with sickle cell disease may pay it frequent visits for emergency care. Encountering problems in ED care is distressingly common. During the SCDAA Annual National Convention in October 2023, SCDAA participated in a joint session with the Emergency Department Sickle Cell Care Coalition (EDSC3) entitled “Summit on Emergency Department Sickle Cell Care.”
- [In Memory of Dr. Lennette Benjamin](https://sicklecelldisease.org/uncategorized/in-memory-of-dr-lennette-benjamin/) - The Sickle Cell Disease Association of America, Inc., (SCDAA) is saddened to hear the news of the passing of Dr. Lennette Benjamin. Dr. Benjamin was a trailblazing physician who made many outstanding contributions to the sickle cell community. She was one of the first to establish a “day hospital” as an alternative to the emergency room for pain management – an approach that is today recognized as a best practice in care.
- [CDC SCD Pregnancy Fact Sheets](https://sicklecelldisease.org/uncategorized/cdc-scd-pregnancy-fact-sheets/) - Learn more about how to stay healthy leading up to, during and after a pregnancy with these newly developed fact sheets from the Centers for Disease Control and Prevention (CDC), the Foundation for Women & Girls with Blood Disorders, the American Society of Hematology and the Sickle Cell Reproductive Health Education Directive.
- [SCDAA Statement About Gene Therapy Approval](https://sicklecelldisease.org/news/scdaa-statement-about-gene-therapy-approval/) - The Food and Drug Administration (FDA) approved two cell-based gene therapies for sickle cell disease (SCD), Casgevy from CRISPR/Vertex and Lyfgenia from bluebird bio. These are the first treatments of their kind available to individuals with SCD in the United States. SCDAA welcomes the approval of these potentially curative therapies which mark major advances in the treatment of sickle cell disease; however, there are valid concerns about accessibility and the potential for adverse effects.
- [SCDAA Statement About Gene Therapy Approval](https://sicklecelldisease.org/marac-statement/scdaa-statement-about-gene-therapy-approval-2/) - On Dec. 8, 2023, the Food and Drug Administration (FDA) approved two cell-based gene therapies for sickle cell disease (SCD), Casgevy from CRISPR/Vertex and Lyfgenia from bluebird bio. These are the first treatments of their kind available to individuals with SCD in the United States. SCDAA welcomes the approval of these potentially curative therapies which
- [MARAC Statement: ASH Report on Exercise and SCT Crisis Risk](https://sicklecelldisease.org/marac-statement/marac-statement-ash-report-on-exercise-and-sct-crisis-risk-2/) - Feb. 5, 2025 – On January 30, 2025, the American Society of Hematology (ASH) published a report that found no evidence to support that physical activity can cause sudden death for individuals with sickle cell trait (SCT) without rhabdomyolysis (muscle breakdown) or heat injury. The article also found that there is not a high-level of
- [Gene Therapy is Approved!](https://sicklecelldisease.org/news/gene-therapy-is-approved/) - We are very excited to share that today, Dec. 8, the Food and Drug Administration approved two gene therapies to treat sickle cell disease! These potentially curative therapies are the first treatments of their kind available to individuals with SCD. We are heartened by this approval and are proud to support our community during this milestone moment. SCDAA will be releasing a full statement and additional information for patients and caregivers soon. To learn more about these approvals
- [Gene Therapy: What You Need to Know (Warrior FAQs)](https://sicklecelldisease.org/uncategorized/gene-therapy-what-you-need-to-know/) - Two gene therapies were recently approved by the Food and Drug Administration (FDA) to treat sickle cell disease: Casegevy from CRISPR/Vertex and Lyfgenia from bluebird bio. You probably have questions about these new treatment options. Read more below. Is gene therapy a cure for sickle cell disease? Gene therapy is a potentially curative therapy. This means that it could act as a cure, but it is too new to say for sure. It causes a big decline in pain episodes, but we need to learn more about long-term impacts and side effects. It is also not a “one-and-done” treatment. The FDA currently recommends 15 years of patient follow up.
- [Sickle Cell Disease is Not a Joke](https://sicklecelldisease.org/news/sickle-cell-disease-is-not-a-joke/) - This weekend’s Saturday Night Live skit about the recent historic approvals of potentially curative gene therapies for sickle cell disease is distasteful at best and harmful at worst. Earlier this month, the Food and Drug Administration approved groundbreaking new treatments that could change the lives of thousands. SNL chose to cast a spotlight on this news with a tone-deaf skit depicting a workplace Yankee Swap event in which one of the gifts is the “cure” for sickle cell disease. It is given to an African American character, who quickly trades it for a “Boogie Woogie Santa Claus” toy. The rest of the skit consists of the white characters trying to convince their two Black co-workers to choose the cure over the other Yankee Swap gifts. Their attempts are unsuccessful.
- [Midterm Election Outcomes and What they Mean for SCD](https://sicklecelldisease.org/advocacy/midterm-election-outcomes-and-what-they-mean-for-scd/) - An update from John Otsuki, SCDAA government relations manager As I am sure you’re aware, the United States recently completed a midterm election. All members of the House of Representatives were up for election or re-election, as they are every 2 years, as were 34 Senators (roughly 1/3 of the total). Before the election, the Democrats controlled both the Senate and the House, both by narrow margins. The 2020-2022 Senate was split 50–50*, with Vice President Kamala Harris breaking tie breakers, effectively giving the Democrats control, while the House was controlled by the Democrats 219 seats to 213 Republican seats.
- [CMMI Announces the Cell and Gene Therapy Access Model](https://sicklecelldisease.org/uncategorized/cmmi-announces-the-cell-and-gene-therapy-access-model/) - Today, the Centers for Medicare and Medicaid Innovation (CMMI) announced the launch of their new Cell and Gene Therapy Access Model, a demonstration aimed at improving access to cell and gene therapy products in the Medicaid program. CMMI chose sickle cell disease (SCD) as the first indication for the model. The intent of the model is to provide access to the two recently approved gene therapy products for SCD for individuals insured by Medicaid. Participation by state Medicaid programs will be optional.
- [MARAC Statement: Parvovirus B19, Fever and Urgent Care](https://sicklecelldisease.org/marac-statement/marac-statement-parvovirus-b19-fever-and-urgent-care/) - MARAC Statement: Parvovirus B19, Fever and Urgent Care Aug. 13, 2024 – More infections with parvovirus B19, also known as “fifth disease” or “slapped-cheek disease,” are showing up in 2024 [1,2]. WHY IS THIS IMPORTANT FOR SICKLE CELL DISEASE? Parvovirus B19 causes a special problem in sickle cell disease called aplastic crisis [3,4,5], and infects
- [MARAC Statement: Pfizer’s Voxelotor (Oxbryta®) Withdrawal](https://sicklecelldisease.org/marac-statement/marac-statement-pfizers-voxelotor-oxbryta-withdrawal/) - SCDAA Medical and Research Advisory Committee (MARAC) Statement: Pfizer’s Voxelotor (Oxbryta®) Withdrawal 9/27/24 What is the news? Pfizer announced the withdrawal of voxelotor (Oxbryta®) from national and global markets on September 25, 2024. Clinical research was also stopped. “Pfizer’s decision is based on the totality of clinical data that now indicate the overall benefit of
- [SCDAA Statement: CMS Cell and Gene Therapy Access Model](https://sicklecelldisease.org/advocacy/scdaa-statement-cms-cell-and-gene-therapy-access-model/) - Nearly one year ago, the Food and Drug Administration (FDA) approved two new gene therapies for the treatment of sickle cell disease. The Sickle Cell Disease Association of America Inc. (SCDAA) is pleased that the manufacturers of these two FDA-approved gene therapy treatments have entered into agreements with the Centers for Medicare & Medicaid Services (CMS) to participate in the Cell and Gene Therapy (CGT) Access Model. These cutting-edge treatments are poised to make a difference in the lives of many sickle cell warriors, but their high price tags are a barrier to access. The CGT Access Model is a promising effort to reduce cost for these potentially curative therapies for eligible individuals, allowing more patients to benefit from these significant advancements in treating diseases. According to an announcement from the Department of Health and Human Services, the model “will test outcomes-based agreements for cell and gene therapies, with the aim to improve health outcomes, increase access to cell and gene therapies, and lower health care costs.” We are also heartened to see that the model will provide fertility preservation for patients, marking an important acknowledgment of quality-of-life standards for our community. The Model will launch in January 2025, and all 50 states may choose to begin participation anytime between January 2025 and January 2026. SCDAA looks forward to working with our community-based organizations and other stakeholders to advocate for state enrollment. The CGT Access Model will provide crucial support to patients where available, and we encourage full participation across the country.
- [In Memory of Frank Reddick](https://sicklecelldisease.org/news/in-memory-of-frank-reddick/) - It is with great sadness that SCDAA shares the news of the passing of Frank Reddick on Dec. 23, 2024. Frank was the president and CEO of the Sickle Cell Disease Association of Florida, an SCDAA member organization headquartered in Tampa. He was a steadfast sickle cell advocate and was the head of the Florida state sickle cell chapters. As a former Tampa city councilman, Frank was a respected leader in his local community. SCDAA sends our sincerest condolences to his family, friends and loved ones.
- [SCDAA Statement on Recent Natural Disasters](https://sicklecelldisease.org/news/scdaa-statement-on-recent-natural-disasters/) - SCDAA stands in solidarity with the warriors, advocates and community-based organizations who have been recently affected by natural disasters, including the devasting wildfires in California and the many hurricanes which hit southern states in the fall. As we pray for a speedy recovery, we send our sincere gratitude to the emergency response teams who worked tirelessly to contain the fires and provide hurricane assistance. If you would like to send support to the Los Angeles and/or those impacted by other natural disasters, we encourage you to explore the below resources. We additionally urge you to remember the importance of donating blood, especially for sickle cell warriors. An emergency of this magnitude can make an already short supply worse. No matter where you are in the country, giving blood as soon as you are able could help someone in need.
- [Editas Medicine Announces Strategic Transition](https://sicklecelldisease.org/news/editas-medicine-announces-strategic-transition/) - Editas Medicine recently announced that they will be making a strategic transition to a in vivo gene editing company. The company intends to develop a transformative in vivo medicine for the treatment of sickle cell disease and beta thalassemia. To learn more, read their FAQs.
- [MARAC Statement: ASH Report on Exercise and SCT Crisis Risk](https://sicklecelldisease.org/news/marac-statement-ash-report-on-exercise-and-sct-crisis-risk/) - On January 30, 2025, the American Society of Hematology (ASH) published a report that found no evidence to support that physical activity can cause sudden death for individuals with sickle cell trait (SCT) without rhabdomyolysis (muscle breakdown) or heat injury. The article also found that there is not a high-level of evidence that sickle cell trait causes acute pain crises.
- [Black History Month 2025: Dr. Charles F. Whitten](https://sicklecelldisease.org/news/black-history-month-2025-dr-charles-f-whitten/) - Our first #SCDHistoryHighlight for Black History Month brings attention to the life and work of SCDAA co-founder Dr. Charles F. Whitten. Dr. Whitten was a pediatric hematologist whose dedication to supporting the health of sickle cell patients paved the way for advances in screening, education and more. His pioneering work makes him one of the most important figures in sickle cell history.
- [Black History Month: Our Early Member Organizations](https://sicklecelldisease.org/news/black-history-month-our-early-member-organizations/) - Last week, we learned about the origins of the Sickle Cell Disease Association of America, Inc. (SCDAA) and the vision for a national coordinated approach to addressing sickle cell disease. This week, our #SCDHistoryHighlight draws attention to the important community-based organizations that joined us in our fight and served as our foundation. During the summer of 1971, the vision for SCDAA – National was formed during a meeting with the 15 member organizations that would soon become our original member organizations. Many of these groups were providing essential support and services to their communities for years prior to this meeting. Each organization offered key perspectives on our shared needs and strategies for reaching our goals. Before too long, SCDAA grew to include other early member organizations, including:
- [Black History Month: National Sickle Cell Anemia Control Act](https://sicklecelldisease.org/news/black-history-month-national-sickle-cell-anemia-control-act/) - After our founding, one of SCDAA’s earliest goals was to ensure the National Sickle Cell Anemia Control Act of 1972 was passed. With our early member organizations in tow, Dr. Whitten and the association began to advocate for this landmark piece of legislation. Our #SCDHistoryHighlight this week looks at why this act was so important for moving sickle cell treatment and research forward. During the 1960s, the civil rights movement brought many issues of racial inequality, including health care disparities, to the foreground. As greater attention was paid to these differences in treatment, access and research, awareness of sickle cell disease increased. More people began to recognize the urgent need for better care and advocate for those improvements. The National Sickle Cell Anemia Control Act of 1972 was introduced in the senate at the end of 1971 and passed into law the next year. It authorized the establishment of the first federal programs promoting sickle cell education, counseling, research, treatments and voluntary screening. The National Sickle Cell Disease Program of the National Heart, Lung and Blood Institute of the National Institutes of Health was implemented, and federally funded Comprehensive Sickle Cell Centers were established. Without this crucial piece of legislation, and the tireless advocacy that helped to pass it, sickle cell disease treatment and research would not be where it is today. The National Sickle Cell Anemia Control Act of 1972 created the necessary foundation to which we owe a great deal of progress. Its passage is a testament to the power of community action and advocacy as we continue to make #SickleCellHistory!
- [Black History Month: Our Current Member Organizations](https://sicklecelldisease.org/news/black-history-month-our-current-member-organizations/) - As Black History Month ends, we would like to look to the future for our final #SCDHistoryHighlight at the amazing work organizations across the country are doing to create a safer environment for our community. We’ve seen many landmark decisions and groundbreaking treatments in the more than 50 years since SCDAA’s founding, but one thing has remained true throughout – that our member organizations are the key to our progress. We currently have 57 member organizations that serve sickle cell warriors, caregivers and community members across 30 states. We define our membership into three categories: Direct Service Agency – These organizations provide support including but not limited to: Case management, testing and screening, counseling and/or medical home assistance. Support Service Agency – These organizations provide support including but not limited to: Medical bill assistance, transportation, career counseling/planning, medical co-pay, funeral/burial, assistance, housing, clothing, food, SSI/Disability, insurance application assistance. Advocacy Service Agency – These organizations provide support including but not limited to: Disseminating SCD/SCT information, attending health fairs and participating and/or host local advocacy events. We deeply value the work of our CBOs, and we work collaboratively across the country to affect positive change at the national, state and local levels. We join together in Washington, D.C., during our Advocacy Days events to raise our voices and ensure that our community-based organizations’ representatives understand the issues facing the sickle cell community. Our member organizations also coalesce during our Annual National Convention in October to support each other in their goals and grow their missions. All told, our member organizations collectively serve over 500,000 children and adults living with sickle cell and their caregivers. These organizations are our boots on the ground, taking dreams and making them realities. As we step into the future, we look to these groups to steer the next era of sickle cell history. Click here to meet our member organizations.
- [Advocacy Alert: Save the Sickle Cell Data Collection Program](https://sicklecelldisease.org/advocacy/advocacy-alert-save-the-sickle-cell-data-collection-program/) - Last week, the Trump administration announced drastic changes and reductions to federal health programs that support the sickle cell disease community
- [SCDAA names events manager](https://sicklecelldisease.org/news/scdaa-names-events-manager/) - The Sickle Cell Disease Association of America Inc., a national nonprofit membership organization that advocates for people affected by sickle cell disease, named Natasha Thomas as events and special projects manager. Thomas previously worked for the association, including as an events consultant for the last three years.
- [In Memory of Dr. Gwendolyn Poles-Corker](https://sicklecelldisease.org/news/in-memory-of-dr-gwendolyn-poles-corker/) - With great sadness, SCDAA shares the news of the loss of Dr. Gwendolyn Poles-Corker on April 8, 2025. The 71-year-old was a trailblazing physician, educator, advocate and sickle cell warrior. She passed away from complications of her disease,
- [In Memory of Dr. Winfred Wang](https://sicklecelldisease.org/news/in-memory-of-dr-winfred-wang/) - SCDAA mourns the loss of prominent pediatric hematologist and sickle cell provider Dr. Winfred Wang, who passed away on April 9 at the age of 82. Dr. Wang practiced at St. Jude Children’s Research Hospital in Memphis, Tennessee. He helped to pioneer the use of hydroxyurea for children with sickle cell disease through his research,
- [Sickle Cell Disease Association names membership manager](https://sicklecelldisease.org/news/sickle-cell-disease-association-names-membership-manager/) - The Sickle Cell Disease Association of America Inc., a national nonprofit membership organization that advocates for people affected by sickle cell disease, named Joel Nepomuceno as membership engagement manager.
- [In Memory of James E. Rawlings](https://sicklecelldisease.org/news/in-memory-of-james-e-rawlings/) - With great sadness, SCDAA shares the news of the passing of James E. Rawlings, president and CEO of Michelle’s House (SCDAA, CT), on Sunday, May 25. In addition to leading one of our oldest member organizations, Mr. Rawlings was a past SCDAA National board member and served as treasurer from 2004-2007. In a statement, Michelle’s House said:
- [SCDAA Statement on the Measles Outbreak](https://sicklecelldisease.org/news/scdaa-statement-on-the-measles-outbreak/) - SCDAA is aware of and monitoring the measles outbreaks that have been reported in several states. There is a fair amount
- [Donate Blood to Support Sickle Cell Patients](https://sicklecelldisease.org/uncategorized/donate-blood-to-support-sickle-cell-patients-2/) - September is Sickle Cell Awareness Month; Red Cross blood and platelet donations needed for patients This school year students battling sickle cell disease and childhood cancers prepare to face challenges in the classroom unknown to their healthy peers. Many will fall behind in coursework after missing weeks of school, require tutoring and special education services.
- [CRISPR Therapeutics and Vertex Announce FDA Fast Track Designation for CTX001 for the Treatment of Sickle Cell Disease](https://sicklecelldisease.org/uncategorized/crispr-therapeutics-and-vertex-announce-fda-fast-track-designation-for-ctx001-for-the-treatment-of-sickle-cell-disease/) - CRISPR Therapeutics and Vertex Pharmaceuticals Incorporated today announced that the U.S. Food and Drug Administration (FDA) has granted Fast Track Designation for CTX001 for the treatment of sickle cell disease (SCD). CTX001 is an investigational, autologous, gene-edited hematopoietic stem cell therapy for patients suffering from severe hemoglobinopathies. The FDA’s Fast Track program is designed to

## Pages

- [Home](https://sicklecelldisease.org/) - Welcome to the Sickle Cell Disease Association of America, Inc. We serve as the national voice for sickle cell disease working to resolve issues surrounding this rare disease and sickle cell trait. Since 1972, our organization has been on the forefront of improving the quality of health, life and services for individuals, families and communities
- [CSL Behring](https://sicklecelldisease.org/csl-behring/) - CSL Behring is a member of SCDAA’s SCD C.A.R.E.S. Consortium. “We are honored to support the SCD C.A.R.E.S. Consortium. Together with the sickle cell community, CSL is committed to reshaping the future of care by: • Advancing meaningful change • Developing and delivering innovative options • Improving lives For more than a century, we have
- [Annual National Convention](https://sicklecelldisease.org/annual-national-convention/) - The National Abstract Competition is now open! Submit your research by June 22 for a chance to present at convention. Learn more. Save the date for the 54th Annual National Convention on October 15-17 at Embassy Suites by Hilton, Charlotte Concord Golf Resort & Spa in Concord, North Carolina! You may know that the iconic dogwood is
- [P.O.W.E.R. ECHO Project](https://sicklecelldisease.org/power-echo-project/) - Are you looking to further your expertise as a community health worker (CHW)? Join SCDAA for our free P.O.W.E.R. ECHO CHW Training sessions! Held throughout the year, these one-hour classes offer crash courses in hot topics. These training sessions are designed to help CHWs continue their education and provide better support services to individuals with
- [Mental Health and Wellness](https://sicklecelldisease.org/mental-health-wellness/) - I Believe in Therapy Toolkit Prioritizing Mental Health as a Sickle Cell Warrior, Caregiver and Health Care Worker As an individual living with sickle cell, caregiver or health care worker, you may be accustomed to prioritizing physical health needs above all else. However, mental health is critical for overall well-being and should not be ignored.
- [SCD C.A.R.E.S. Consortium](https://sicklecelldisease.org/cares-consortium/) - The mission of this initiative is to raise awareness about the importance of clinical trials and why it’s beneficial for sickle cell warriors to participate in them. SCDAA, along with our strategic partners, joined together to educate and encourage more trial participation while providing opportunities and therefore better options for the treatment of sickle cell
- [Board Members](https://sicklecelldisease.org/about-us/board-members/) - Meet Our Board Members Thomas L. Johnson, JDChair of the Board Executive Director ASAP 340B Washington, DC Adeyinka Ogunlegan, Esq.Vice Chair Chief of Staff & Vice President, Federal Affairs National Urban League Washington, D.C. Ed FlowersBoard Secretary Managing Partner & CHRO Practice Leader and Executive Committee Member DHR Global Atlanta, GA Kenneth Thorpe, PhD, MABoard
- [SCDAA Advocacy Days](https://sicklecelldisease.org/advocacy-day/) - Advocacy Days is an opportunity for patients and caregivers affected by sickle cell disease to learn how to advocate for issues that are important to them. Participants will learn about the key legislative issues that are important to individuals living with SCD and their families, including promoting stable funding for research, better health care access
- [Illinois](https://sicklecelldisease.org/illinois/) - Sickle Cell Disease Association of Illinois 8108 S. Western Avenue, Chicago, IL 60620 (773) 526-5016 www.scdaicares.com Sick Cells 2100 Manchester Road, Suite 1040, Wheaton, IL 60187 www.sickcells.org/ Back to Member Organizations Map
- [SCDAA and MedicAlert Pilot Program](https://sicklecelldisease.org/scdaa-and-medicalert-pilot-program/) - During a sickle cell pain crisis, time is of the essence. SCDAA, Fulcrum Therapeutics and the MedicAlert Foundation have partnered to help streamline and expedite emergency department (ED) care for people living with sickle cell disease (SCD) through rapid access to patient-specific care plans. Read the announcement and learn more about the program and how
- [For Providers](https://sicklecelldisease.org/for-providers/) - Sickle cell warriors depend on their providers and local health care systems to access the care they need – especially during pain crises. Whether you are a doctor, nurse or community health worker, you play an important role in advocating for these rare disease patients. Learn more about the patient experience and research into this
- [Kentucky](https://sicklecelldisease.org/kentucky/) - Sickle Cell Association of Kentuckiana 201 East Jefferson St. Suite 230, Louisville, KY 40202 www.thescakky.org/ Back to Member Organizations Map
- [South Carolina](https://sicklecelldisease.org/south-carolina/) - James R. Clark Memorial Sickle Cell Foundation 1420 Gregg Street, Columbia, SC 29201 803-765-9916 https://www.jamesrclarksicklecell.org/ Louvenia D. Barksdale Sickle Cell Anemia Foundation PO Box 191, Spartanburg, SC 29304 864-582-9420 www.ldbarksdalesc.org/ The Riley Foundation for Sickle Cell Disease 291 Highway 90 East Suite D, Little River, SC 29565 www.unsickcells.org/ Back to Member Organizations Map
- [For Warriors and Caregivers](https://sicklecelldisease.org/for-warriors-and-caregivers/) - Sickle cell disease can be a lot to handle. Fortunately, you are not alone. Today, we have more resources than ever before to treat the physical, mental and social impacts of sickle cell disease. Learn more about how to stay healthy and live well with sickle cell. Navigating the Medical System Even though over 100,000
- [Pennsylvania](https://sicklecelldisease.org/pennsylvania/) - Children’s Sickle Cell Foundation 226 Paul Street, Suite 102, Pittsburgh, PA 15211 https://www.cscfkids.org/ Sickle Cell Disease Association of America Philadelphia/Delaware Valley Chapter 5300 Wynnefield Ave 2nd Floor, Philadelphia, PA 19131 (215) 471-8686 Back to Member Organizations Map
- [SCDAA's Current Legislative Priorities](https://sicklecelldisease.org/current-legislative-priorities/) - For the most up to date information, check out our latest Advocacy Update. Legislation passed in 2025 made sweeping changes to the Medicaid program. The changes with direct impact on sickle cell warriors go into effect in 2027; for certain Medicaid beneficiaries, this includes more frequent eligibility redeterminations and work reporting requirements. SCDAA’s main priority is to protect access to Medicaid coverage
- [Site Map](https://sicklecelldisease.org/site-map/) - About Us Mission and Vision History National Staff Board Members SCDAA Member Finder Financials and Accountability Job Openings 2025 Impact Report Resources About Sickle Cell Disease About Sickle Cell Trait For Warriors and Caregivers For Providers Clinical Trials and Research MARAC Advisories Resource Library Gene Therapy Initiatives Mental Health and Wellness MedicAlert Pilot Get Connected
- [2025 Impact Report](https://sicklecelldisease.org/impact-report/)
- [Find Your Representative](https://sicklecelldisease.org/find-your-representative/) - Our elected officials – whether they’re on Capitol Hill or in your local city hall – make a lot of important choices that have a huge impact on the treatment of and research into sickle cell disease. Play an active role in these decisions by contacting your representatives! It is important for our elected officials
- [Clinical Trials and Research](https://sicklecelldisease.org/clinical-trials-and-research/) - Treatments for sickle cell disease have improved drastically in the past thirty years. Research plays a big role in this progress. Although many people feel nervous about participating in clinical trials, the modern research process is patient-centered, and safety is the top priority. Participating in clinical trials and research not only allows you to access
- [New York](https://sicklecelldisease.org/new-york/) - Falling Angels Sickle Cell Foundation 55 Ramapo Road, Garnerville, NY 10923 (845) 947-8542 https://fallingangelsscf.org/ Back to Member Organizations Map
- [Mental Health and Wellness](https://sicklecelldisease.org/mental-health-and-wellness/) - I Believe in Therapy Toolkit Prioritizing Mental Health as a Sickle Cell Warrior, Caregiver, and Healthcare Worker As an individual living with sickle cell, caregiver, or healthcare worker, you may be accustomed to prioritizing physical health needs above all else. However, mental health is critical for overall well-being and should not be ignored. Although mental
- [Become a Member](https://sicklecelldisease.org/become-a-member/) - Sickle Cell Foundation of Georgia Sickle Cell Foundation of Georgia SCDAA - Northwest Louisana Chapter Supporters of Families with Sickle Cell Disease, Inc. Sickle Cell Foundation of Georgia Our member organizations are at the heart of SCDAA. These groups provide direct support and advocacy to community members across 30 states and allow us to reach
- [Your Stories](https://sicklecelldisease.org/your-stories/) - There are over 100,000 sickle cell warriors in the United States, but many people suffer in silence. Creating a more understanding society starts here, with one simple yet powerful tool: Your story. Speaking up about sickle cell helps health care providers understand the urgency of pain crises, helps legislators, pharmaceutical companies, and scientists understand why
- [Ohio](https://sicklecelldisease.org/ohio/) - SCDAA Ohio Sickle Cell and Health Association, Inc. 341 South 3rd Street, Suite 200, Columbus, OH 43215 (845) 947-8542 https://ohiosicklecell.org/new/ Back to Member Organizations Map
- [Clinical Trials and Research Full Width](https://sicklecelldisease.org/clinical-trials-and-research-full-width/) - The Clinical Trial Finder Clinical Trial Information Brought to You by the SCD C.A.R.E.S. (Collaboration of Advocates for Research, Education and Science) Consortium
- [History](https://sicklecelldisease.org/about-us/history/) - Celebrating more than 50 years of leadership and progress. SCDAA was founded in 1972 as the first organization to address concerns about sickle cell disease on a national level. Since then, our community has made enormous progress in raising awareness, developing new treatments and advocating for a better quality of life for sickle cell warriors.
- [Mission and Vision](https://sicklecelldisease.org/about-us/mission-and-vision/) - The Voice of Sickle Cell No one should suffer in silence. The Sickle Cell Disease Association of America, Inc. (SCDAA) was founded in 1972 to give a national voice to the thousands of Americans across the country who live with sickle cell disease and their families. We bring together individuals, organizations and stakeholders as we
- [Florida](https://sicklecelldisease.org/florida/) - SCDA of Broward County 3900 W. Commercial Blvd Suite 246, Tamarac, FL 33309 954-524-4920 https://sicklefreebroward.org/ Levi Long Sickle Cell Association 240 N. Frederick Ave., Suite A, Daytona Beach, FL 32114 386-795-0965 SCDAA Miami-Dade County Chapter, Inc 1601 NW 12th Avenue Room 3036 A, Miami, FL 33136 404-435-7243 https://sicklecellmiami.org/ Sickle Cell Medical Advocacy, Inc. 1317 Edgewater
- [About Sickle Cell Disease](https://sicklecelldisease.org/about-sickle-cell-disease/) - Sickle cell disease (SCD) is a rare inherited blood disorder in which red blood cells may become sickle-shaped and harden, causing serious and potentially fatal complications. People with sickle cell disease are born with this condition. It can cause chronic, severe and unpredictable pain. It is not contagious, and there is no universal cure. About
- [National Staff](https://sicklecelldisease.org/about-us/national-staff/) - Regina Hartfield President and CEO Reginald Hart Chief Financial Officer Erika Cartledge Director of Development and Stakeholder Engagement Kevin Amado Senior Community Impact & Engagement Manager Natasha Thomas Events and Special Projects Manager Joel Nepomuceno Member Engagement Manager Teaira Brown Staff Accountant Phoelicia Blagmon Executive Assistant
- [About Sickle Cell Trait](https://sicklecelldisease.org/about-sickle-cell-trait/) - People with sickle cell trait (SCT) have genes that tell their body to produce both normal and abnormal hemoglobin. Like sickle cell disease, it is an inherited condition. Unlike sickle cell disease, it does not usually cause significant health problems – so many people do not know they have it. Why Sickle Cell Trait Matters
- [Volunteer](https://sicklecelldisease.org/volunteer/) - SCDAA appreciates the support and dedication of our volunteers. We encourage you to get involved and help us carry out our mission! Become a Social Media Ambassador One of the easiest ways to help us amplify our message is by supporting us on social media. Follow us and interact with our content to spread the
- [Job Openings](https://sicklecelldisease.org/job-openings/) - Thank you for your interest in joining our team! We invite you to browse our open job positions below and explore our website to learn more about our work. No Open Positions Posted. Check Back Soon! Employment and Application Considerations SCDAA is headquartered in Hanover, Maryland. Unless otherwise specified, our positions are hybrid. SCDAA will
- [SCDAA Golf Classic](https://sicklecelldisease.org/scdaa-golf-classic/) - The inaugural SCDAA Golf Classic — a signature tournament uniting purpose, play and community to support the fight against sickle cell disease — was recently held at the beautiful Chapel Hills Golf Club in Douglasville, Georgia. During this unforgettable day, golfers, advocates and supporters enjoyed a lively 18-hole scramble, premium giveaways, a post-round lunch and
- [National Sickle Cell Awareness Month](https://sicklecelldisease.org/national-sickle-cell-awareness-month/) - September is National Sickle Cell Awareness Month, designated by Congress to help focus attention on the need for research and treatment of sickle cell disease. We encourage everyone to be a part of this annual effort to increase awareness about sickle cell disease and sickle cell trait during the month of September. Individuals and organizations
- [World Sickle Cell Day and Shine the Light](https://sicklecelldisease.org/world-sickle-cell-day/) - June 19 is World Sickle Cell Day Every year, SCDAA is proud to join communities across the globe to recognize World Sickle Cell Day. The international awareness day aims to increase the public’s knowledge and understanding of sickle cell disease and the challenges experienced by patients and their families and caregivers. Shine The Light on
- [SCDAA Warrior Walkathon](https://sicklecelldisease.org/walk-with-the-stars/) - The 2025 Walkathon was held on July 19, 2025, in Baltimore, Maryland. Stay tuned for info about the 2026 walk! Every year, the SCDAA Warrior Walkathon is a great opportunity to get up, get active and make a difference! This in-person and virtual fundraiser offers our community the chance to move and celebrate together. View
- [LEGISLATIVE BRIEFINGS](https://sicklecelldisease.org/legislative-briefings/) - December 23, 2025DECEMBER 2025 LEGISLATIVE BRIEFING September 8, 2025SEPTEMBER 2025 LEGISLATIVE BRIEFING October 1, 2024OCTOBER LEGISLATIVE BRIEFING June 1, 2024JUNE LEGISLATIVE BRIEFING March 1, 2024MARCH LEGISLATIVE BRIEFING
- [Connecticut](https://sicklecelldisease.org/connecticut/) - Sickle Cell Disease Association of America, Connecticut 1389 Chapel Street, New Haven, CT 06511 203-859-5355 https://www.michelleshousect.org/ Back to Member Organizations Map
- [Giving Campaigns](https://sicklecelldisease.org/giving-campaigns/) - Rare Disease Day Rare Disease Day is recognized on February 28 (or February 29 on a leap year). This event raises the general public’s awareness of rare diseases like sickle cell disease. Our Rare Disease Day campaign rallies our community for a one-day fundraiser to make a collective impact on the lives of those affected
- [Advocacy Alerts & Updates](https://sicklecelldisease.org/alerts-updates/) - March 19, 2026SCD Advocacy Update: March 2026 March 13, 2026Fulcrum Therapeutics to Host Congressional Briefing February 3, 2026Congress Passes Government Funding Bill with Big Wins for the SCD Community December 23, 2025DECEMBER 2025 LEGISLATIVE BRIEFING December 15, 2025SCDAA Response to National Academies Release of Final Report on Sickle Cell Disease and Social Security Disability Evaluations
- [Medical and Research Advisory Committee](https://sicklecelldisease.org/marac/) - In 2020, SCDAA’s Medical and Research Advisory Committee (MARAC) was formed to address community concerns about COVID-19. Since then, MARAC’s team of acclaimed sickle cell experts have provided important guidance on topics like gene therapy, vaccinations, infectious diseases and more. MARAC’s global reach helps inform sickle cell warriors, caregivers and providers across the world. MARAC
- [SCDAA Member Finder](https://sicklecelldisease.org/scdaa-member-finder/) - SCDAA’s member organizations are the backbone of our organization and provide on-the-ground support to sickle cell warriors and caregivers in their regions. These groups have a deep understanding of the issues impacting their unique communities and allow us to have the greatest impact across the country. Click here to learn more about our member organizations and
- [Donate](https://sicklecelldisease.org/donate/) - SCDAA offers many significant opportunities to support the important work of the organization while providing a tax-deductible contribution to donors. One-Time Gifts: Check, Debit Card and Credit Card The easiest and most popular gifts to SCDAA are unrestricted contributions. SCDAA accepts these contributions via credit or debit card including Visa, Mastercard, Discover and American Express.
- [Resource Library](https://sicklecelldisease.org/resource-library/)
- [Gene Therapy](https://sicklecelldisease.org/resources/gene-therapy/) - Two gene therapies were approved in Dec. 2023 by the Food and Drug Administration (FDA) to treat sickle cell disease: exagamglogene autotemcel and lovotibeglogene autotemcel. These treatments are considered potentially curative. Print the FAQs Print a Brochure STEP ONE Doctors collect stem cells from your body. The blood-forming stem cells make your red blood cells
- [50 Years Forward](https://sicklecelldisease.org/50-years-forward/) - For more than half a century, the Sickle Cell Disease Association of America, Inc. (SCDAA) has been a driving force in the fight against sickle cell disease – igniting hope, spreading awareness and supporting individuals and their caregivers, affected by this condition. Now, we are focused on the next phase of our journey and creating
- [Louisiana](https://sicklecelldisease.org/louisiana/) - Sickle Cell Disease Northwest Louisiana 3658 Judson Street, Shreveport, LA 71109 (318)636-5300 https://www.sicklecellnwla.org/ Northeast Louisiana Sickle Cell Anemia Foundation, Inc. 1604 Winnsboro Road, Monroe, LA 71202 (318) 322-0896 https://monroesicklecell.org/ Etta Pete Sickle Cell Anemia Foundation 1901 Harless Street Lake Charles, LA 71601 www.epsicklecell.org 337-965-3371 Lypete.epscaf@gmail.com Sickle Cell Anemia Resource Foundation 3600 Jackson Street, Ste. 195
- [Massachusetts](https://sicklecelldisease.org/massachusetts/) - Massachusetts Sickle Cell Association 1803 Dorchester Ave Dorchester, MA, 02124 www.sickelcellhope.org 617-825-4595 info@gbscda.org Back to Member Organizations Map
- [Kansas](https://sicklecelldisease.org/kansas/) - Uriel Owens Sickle Cell Disease Association of the Midwest 444 Minnesota Avenue, Suite 300, Kansas City, KS 66101 913-735-2622 https://www.sicklecellmidwest.org/ Back to Member Organizations Map
- [SCDAA Statement About Gene Therapy Approval](https://sicklecelldisease.org/scdaa-statement-about-gene-therapy-approval-old/) - On Dec. 8, 2023, the Food and Drug Administration (FDA) approved two cell-based gene therapies for sickle cell disease (SCD), Casgevy from CRISPR/Vertex and Lyfgenia from bluebird bio. These are the first treatments of their kind available to individuals with SCD in the United States. SCDAA welcomes the approval of these potentially curative therapies which
- [Gene Therapy: What You Need to Know (Warrior FAQs)](https://sicklecelldisease.org/scdaa-warrior-faqs/) - Download a Printable Brochure | Download a Printable Statement Two gene therapies were approved in Dec. 2023 by the Food and Drug Administration (FDA) to treat sickle cell disease: exagamglogene autotemcel and lovotibeglogene autotemcel. You probably have questions about these new treatment options. Read more below. Is gene therapy a cure for sickle cell disease?
- [Novo Nordisk](https://sicklecelldisease.org/scdcares-novonordisk/) - Novo Nordisk is a member of SCDAA’s SCD C.A.R.E.S. Consortium. At Novo Nordisk, we believe in change. We are parents, colleagues, neighbors and friends — people living with the complexities of serious diseases. And we believe in the combination of science and soul to help nurture each other back to good health. For almost 100
- [Pfizer](https://sicklecelldisease.org/scd-cares-pfizer/) - Pfizer is a member of SCDAA’s SCD C.A.R.E.S. Consortium. “Pfizer is working to discover and develop treatments for people living with serious blood disorders, including sickle cell disease (SCD). We recognize that people living with SCD need solutions for disease symptoms as well as potential treatment options. Our deep market knowledge and insights we have
- [Hemanext](https://sicklecelldisease.org/scdcares-hemanext/) - Hemanext is a member of SCDAA’s SCD C.A.R.E.S. Consortium. Hemanext is a privately held medical technology company based in Lexington, MA that is dedicated to improving transfusion therapy. Visit their website to learn more about the company. Follow Hemanext on social media The SCD C.A.R.E.S. Consortium aims to change the perception of clinical trials and
- [Afimmune](https://sicklecelldisease.org/scd-cares-afimmune/) - Afimmune is a member of SCDAA’s SCD C.A.R.E.S. Consortium. “Afimmune is a drug discovery and development company. We are dedicated to improving the quality of life for people with rare blood disorders and inflammatory conditions, including sickle cell disease (SCD). With a strong focus on addressing the unmet needs within SCD, our mission is driven
- [New Jersey](https://sicklecelldisease.org/new-jersey/) - The Sickle Cell Association of New Jersey, Inc. 1016 Broad Street, Newark, NJ 7102 973 482-9070 https://sicklecellnewjersey.org/ Back to Member Organizations Map
- [Maryland](https://sicklecelldisease.org/maryland/) - Association for the Prevention of Sickle Cell Anemia of Harford/Cecil Counties and Eastern Shore P. O. Box 208, Aberdeen, MD 21009 (443) 307-1921 https://www.apscainc.org/ The Maryland Sickle Cell Disease Association 8775 Centre Park Drive, Suite 701, Columbia, MD 21045 410-465-4822 https://marylandsicklecelldisease.org/ Back to Member Organizations Map
- [Delaware](https://sicklecelldisease.org/delaware/) - Tova Community Health, Inc. 213 Greenhill Avenue, Wilmington, DE 19805 302-429-5870 ext. 120 https://tovacommunityhealth.org/ Back to Member Organizations Map
- [Virginia](https://sicklecelldisease.org/virginia/) - Sickle Cell Association, Inc. 870 N. Military Highway, Suite 201, Norfolk, VA 23502 757-466-0332 https://www.sicklecellhrva.org/about/ Back to Member Organizations Map
- [North Carolina](https://sicklecelldisease.org/north-carolina/) - Piedmont Health Services and Sickle Cell Agency 1102 E. Market St, Greensboro, NC 27401 (336) 274-1507 https://www.piedmonthealthservices.org/ Bridges Pointe Sickle Cell Foundation 800 N. Mangum Street, Suite 103, Durham, NC 27701 919-824-6652 https://www.bridgespointenc.org/ Back to Member Organizations Map
- [Georgia](https://sicklecelldisease.org/georgia/) - Sickle Cell Foundation of Georgia 2391 Benjamin E Mays Drive SW, Atlanta, GA 30311 (404) 755-1641 https://www.sicklecellga.org/ Back to Member Organizations Map
- [Alabama](https://sicklecelldisease.org/alabama/) - Southeast Alabama Sickle Cell Association Inc. 4201 W MLK Highway, Tuskegee, AL 36087 (334) 727-6120 http://www.seasca.com/ Sickle Cell Disease Association of America – West Alabama Chapter, Inc. 700 Energy Center Boulevard, Suite 403, Northpoint, AL 35473 (205) 758-1761 https://sicklecellwestal.org/ Sickle Cell Disease Association of America – Mobile Chapter, Inc. 1453 Springhill Avenue, Mobile, AL 36604
- [Tennessee](https://sicklecelldisease.org/tennessee/) - Sickle Cell Foundation of Tennessee 680 Oakleaf Office Lane, Suite 101, Memphis, TN 38117 901-552-4267 https://www.sicklecelltn.org/ Back to Member Organizations Map
- [Michigan](https://sicklecelldisease.org/michigan/) - Sickle Cell Disease Association of America, Michigan Charter, Inc. 18516 James Couzens, Detroit, MI 48235 (313) 864-4406 https://www.scdaami.org/ Back to Member Organizations Map
- [Indiana](https://sicklecelldisease.org/indiana/) - Martin Center Sickle Cell Initiative 3549 N. College Avenue, Indianapolis, IN 46205 317-927-5158 https://themartincenter.org/ Back to Member Organizations Map
- [Wisconsin](https://sicklecelldisease.org/wisconsin/) - Sickle Cell Warriors of Wisconsin 2107 N. Dr. Martin Luther King Jr. Drive Milwaukee, WI 53212 www.sicklecellmke.org info@sicklecellmke.org Back to Member Organizations Map
- [Minnesota](https://sicklecelldisease.org/minnesota/) - Sickle Cell Foundation of Minnesota P.O. Box 22306, Minneapolis, MN 55422 612-444-1727 https://www.sicklecellmn.org/ Back to Member Organizations Map
- [Missouri](https://sicklecelldisease.org/missouri/) - Sickle Cell Association of St. Louis 5615 Pershing Avenue, Suite 29, St. Louis, MO 63112 314-833-6751 https://sicklecellassociation.org/ Back to Member Organizations Map
- [Oklahoma](https://sicklecelldisease.org/oklahoma/) - Supporters of Families with Sickle Cell Disease, Inc. 5424 N. Madison Avenue, Tulsa, OK 74126 918-619-6174 https://sicklecelloklahoma.org/ Back to Member Organizations Map
- [Texas](https://sicklecelldisease.org/texas/) - Sickle Cell Association of Houston 4014 Market Street, Houston, TX 77020 (832) 930-7224 https://www.sicklecellhouston.org/ Sickle Cell Association of Texas Marc Thomas Foundation 314 E. Highland Mall Blvd, Suite 411, Austin, TX 78752 (512) 458-9767 https://www.sicklecelltx.org/ Back to Member Organizations Map
- [Colorado](https://sicklecelldisease.org/colorado/) - Colorado Sickle Cell Association 6795 E. Tennessee Suite 439, Denver, CO 80224 (303) 333-2606 https://www.coloradosicklecellassociation.org/ Back to Member Organizations Map
- [Nevada](https://sicklecelldisease.org/nevada/) - Bridging the Gap – The Adult Sickle Cell Foundation of Nevada P.O. Box 364464, N Las Vegas, NV 89036 702-205-2272 www.btgadultsicklecell.org Back to Member Organizations Map
- [California](https://sicklecelldisease.org/california/) - Cayenne Wellness P. O. Box 3856, Glendale, CA 91221 818-840-9484 https://cayennewellness.org/ Back to Member Organizations Map
- [Oregon](https://sicklecelldisease.org/oregon/) - Sickle Cell Foundation of Oregon 4927 NE 55th Avenue, Portland, OR 97218 (503) 249-1366 http://sicklecelloregon.org/ Back to Member Organizations Map
- [New Mexico](https://sicklecelldisease.org/new-mexico/) - The Sickle Cell Council Of New Mexico, Inc. PO Box 97482, Albuquerque, NM 87193 505-239-6610 Back to Member Organizations Map
- [Our Stories](https://sicklecelldisease.org/our-stories/) - Living with Sickle Cell Disease
- [Financials and Accountability](https://sicklecelldisease.org/financials-and-accountability/) - 2021 IRS Form 9902020 IRS Form 9902019 Annual Report2019 IRS Form 9902018 IRS Form 9902017 Annual Report2017 IRS Form 990
- [Advocacy](https://sicklecelldisease.org/advocacy/)
- [Events](https://sicklecelldisease.org/events/)
- [Privacy](https://sicklecelldisease.org/privacy/)
- [Disclaimer](https://sicklecelldisease.org/disclaimer/)
- [Finder](https://sicklecelldisease.org/finder/)
- [Clinical Trial](https://sicklecelldisease.org/clinical-trial/)
- [Privacy Policy](https://sicklecelldisease.org/privacy-policy/) - Who we areSuggested text: Our website address is: https://wpdemo12.com.CommentsSuggested text: When visitors leave comments on the site we collect the data shown in the comments form, and also the visitor’s IP address and browser user agent string to help spam detection.An anonymized string created from your email address (also called a hash) may be provided
- [Get Involved](https://sicklecelldisease.org/get-involved/)
- [Training](https://sicklecelldisease.org/training/)
- [Resources](https://sicklecelldisease.org/resources/)
- [About Us](https://sicklecelldisease.org/about-us/)

## Banners

- [Banner One](https://sicklecelldisease.org/banner/banner-one/) - Advocating. Educating. Raising Awareness. Donate Become a Member Sickle Cell Disease Association of America, Inc.

## National Program Initiatives

- [CHW Training](https://sicklecelldisease.org/program/chw-training/) - If you have a passion for community health or you have been personally affected by SCD, SCDAA encourages you to apply for community health worker (CHW) training.
- [SCD C.A.R.E.S. Consortium](https://sicklecelldisease.org/program/scd-c-a-r-e-s-consortium/) - The mission of this initiative is to raise awareness about the importance of clinical trials and why it’s beneficial for sickle cell warriors to participate in them.
- [Advocacy](https://sicklecelldisease.org/program/advocacy/) - Sickle Cell Disease Association of America, Inc. (SCDAA) actively works with legislators and regulators at both the state and federal levels to advance SCD policies.

## Data & Statistics

- [1 in 13 African-Americans have Sickle Cell Trait (SCT)](https://sicklecelldisease.org/data-statistic/1-in-13-black-americans-have-sickle-cell-trait-sct/) - 1 in 13 African-Americans have Sickle Cell Trait (SCT)
- [1 in 350 Black Americans have sickle cell disease (SCD)](https://sicklecelldisease.org/data-statistic/1-in-365-black-americans-have-sickle-cell-disease-scd/) - 1 in 350 Black Americans have sickle cell disease (SCD)
- [300,000+ Babies born internationally each year with SCD](https://sicklecelldisease.org/data-statistic/300000-babies-born-internationally-each-year-with-scd/) - 300,000+ Babies born internationally each year with SCD
- [100,000 People in the United States have Sickle Cell Disease (SCD)](https://sicklecelldisease.org/data-statistic/100000-people-in-the-united-states-have-sickle-cell-disease-scd/) - 100,000 People in the United States have sickle cell disease (SCD)

## Real3D Flipbook

- [2025 Impact Report](https://sicklecelldisease.org/flipbook/2025-impact-report/)

## Categories

- [Uncategorized](https://sicklecelldisease.org/category/uncategorized/)
- [Advocacy](https://sicklecelldisease.org/category/advocacy/)
- [News](https://sicklecelldisease.org/category/news/)
- [MARAC Statements](https://sicklecelldisease.org/category/marac-statement/)
- [CMO Speaks](https://sicklecelldisease.org/category/cmo-speaks/)
- [Legislative Briefing](https://sicklecelldisease.org/category/legislative-briefing/)

## Tags

- [SCDAA Statement](https://sicklecelldisease.org/tag/scdaa-statement/)
- [In Memory](https://sicklecelldisease.org/tag/in-memory/)
- [Staff](https://sicklecelldisease.org/tag/staff/)
- [Sickle Cell News](https://sicklecelldisease.org/tag/sickle-cell-news/)
- [Black History Month](https://sicklecelldisease.org/tag/black-history-month/)
- [Medical Advisory](https://sicklecelldisease.org/tag/medical-advisory/)
- [Advocacy](https://sicklecelldisease.org/tag/advocacy/)
- [Gene Therapy](https://sicklecelldisease.org/tag/gene-therapy/)
- [Living Well](https://sicklecelldisease.org/tag/living-well/)
- [CMO Speaks](https://sicklecelldisease.org/tag/cmo-speaks/)
- [Emergency Department](https://sicklecelldisease.org/tag/emergency-department/)
- [For Physicians](https://sicklecelldisease.org/tag/for-physicians/)
- [Events](https://sicklecelldisease.org/tag/events/)
- [Convention](https://sicklecelldisease.org/tag/convention/)
- [SCD C.A.R.E.S. Consortium](https://sicklecelldisease.org/tag/scd-c-a-r-e-s-consortium/)
- [Women's History Month](https://sicklecelldisease.org/tag/womens-history-month/)
- [Board](https://sicklecelldisease.org/tag/board/)
- [Clinical Trials](https://sicklecelldisease.org/tag/clinical-trials/)
- [Sickle Cell Trait](https://sicklecelldisease.org/tag/sickle-cell-trait/)
- [Sickle Cell Awareness Month](https://sicklecelldisease.org/tag/sickle-cell-awareness-month/)
- [Legislative Briefing](https://sicklecelldisease.org/tag/legislative-briefing/)
- [Awards](https://sicklecelldisease.org/tag/awards/)
- [Development](https://sicklecelldisease.org/tag/development/)
- [SCD Advocacy Update](https://sicklecelldisease.org/tag/scd-advocacy-update/)
- [Masterclass](https://sicklecelldisease.org/tag/masterclass/)