News

The Sickle Cell Disease Association of America, Inc. (SCDAA) was deeply saddened to hear of the recent loss of Genesis Jones. The post In Memory of Genesis Jones first appeared on SCDAA.

In recognition of the Congressional Black Caucus' 55th Annual Legislative Conference, SCDAA is pleased to announce it will host a fall Sickletini on the Hill event! The post SCDAA to Host Sickletini on the Hill first appeared on SCDAA.

The Medical Research and Advisory Committee (MARAC) of the Sickle Cell Disease Association of America, Inc., (SCDAA) is saddened to hear the news that Oxbryta® (voxelotor) will not be made available for the treatment of sickle cell disease. The post MARAC Statement: Response to Oxbryta® Update first appeared on SCDAA.

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 of the community health worker profession. The post Nominate a CHW for the 2026 CHW P.O.W.E.R Award first appeared on SCDAA.

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 cell disease (SCD). The post MARAC Statement: FDA Approval of First Gene Therapy for Children Ages 2+ With SCD first appeared on SCDAA.

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. The post SCDAA Seeks New Board Members first appeared on SCDAA.

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. The post SCDAA Urges Renewal of Critical Sickle Cell Program first appeared on SCDAA.

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. The post MARAC Statement on Pociredir first appeared on SCDAA.

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 Sickle Cell Disease Caucus. On May 7, advocates took to Capitol Hill and met with 34 offices to ask Members of Congress to support the sickle cell disease community. The post SCD Advocacy Update June 2026 first appeared on SCDAA.

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. The post SCDAA and NHLBI To Host Event first appeared on SCDAA.