Nominate a CHW for the 2026 CHW P.O.W.E.R Award
As we get closer to the SCDAA Annual Convention we would like to recognize the amazing work performed by community health workers (CHWs) with the SCDAA CHW P.O.W.E.R. Award. This award recognizes exemplary performance by individuals identified by their supervisors and peers as having consistently excelled in their positions and demonstrated integrity and a strong commitment to the sickle cell disease (SCD) community and values.....
MARAC Statement: FDA Approval of First Gene Therapy for Children Ages 2+ With SCD
The Medical Research and Advisory Committee (MARAC) of the Sickle Cell Disease Association of America, Inc., (SCDAA) is excited about the Food and Drug Administration’s (FDA) approval of Casgevy (exagamglogene autotemcel) for sickle cell patients aged 2 years and older. We are encouraged to learn they are “committed to prioritizing and speeding up the review of products that address critical U.S. health priorities,” including sickle.....
SCDAA Seeks New Board Members
The success of any organization, for profit or not for profit, is measured by its leadership. As organizational leaders, we value the commitment, vision and passion our board members bring. The board of directors for Sickle Cell Disease Association of America, Inc. (SCDAA) looks to those who serve – or have served – so passionately, to nominate qualified individuals to the board of directors for.....
SCDAA Urges Renewal of Critical Sickle Cell Program
The Sickle Cell Disease Association of America Inc. urges the U.S. Department of Health and Human Services (HHS) and its Health Resources and Services Administration (HRSA) to issue the funding opportunity for the Sickle Cell Disease Newborn Screening Follow-Up Program to ensure the next five-year grant cycle, which is set to start Sept. 1, proceeds without delay......
MARAC Statement on Pociredir
The Sickle Cell Disease Association of America, Inc. (SCDAA) Medical and Research Advisory Committee (MARAC) is saddened to hear the news that Fulcrum Therapeutics is discontinuing development of its pociredir program for the treatment of sickle cell disease......
SCD Advocacy Update June 2026
From May 6-7, 24 representatives from 13 SCDAA members organizations across 11 states traveled to Washington, D.C., for SCDAA’s Advocacy Days. Attendees participated in a briefing on May 6, which included information about how to have a successful Congressional meeting, an overview of the issues and asks and a visit from Representative Glenn Ivey (D-MD-04), one of the new co-chairs of the recently relaunched Congressional.....
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,.....
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......