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,.....

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,.....

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.....

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.....

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......

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......

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......

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......

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......