News

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.

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. The post 2026 National Abstract Competition first appeared on SCDAA.

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. The post Novo Nordisk Announces Promising Topline HIBISCUS Study Results first appeared on SCDAA.

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. The post SCDAA Masterclass (Hosted by Agios Cheat Codes) Now Available first appeared on SCDAA.

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. The post SCD Advocacy Update: March 2026 first appeared on SCDAA.

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. The post In Remembrance of KiKi Shepard first appeared on SCDAA.