News

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.

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.

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.

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 for people living with sickle cell disease (SCD) through rapid access to patient-specific care plans. The post MedicAlert Foundation, SCDAA & Fulcrum Therapeutics Partner 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.

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. The post Fulcrum Therapeutics to Host Congressional Briefing first appeared on SCDAA.

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. The post Black History Month 2026: Dr. Charles Drew first appeared on SCDAA.

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. The post Black History Month 2026: Dr. Marilyn Hughes Gaston first appeared on SCDAA.