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.....

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 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......

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.....

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,.....

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......

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......

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......

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,.....