FAST Brings Angelman Syndrome Community Perspective to FDA Rare Disease Roundtable
FAST joined 15 advocacy groups at the FDA Rare Disease Roundtable this week, representing the Angelman syndrome community as therapies advance from research toward real-world development.
Progress for Angelman Syndrome Relies on a Strong NIH and FDA
Angelman syndrome research is at a turning point, and federal cuts could put that progress at risk. FAST and ASF are urging congressional leaders to protect the NIH and FDA expertise that helps move treatments safely to families.
The Economic Burden of Caring for Individuals with Angelman Syndrome
Angelman syndrome affects entire families: a new study estimates caregiving costs nearly $80,000 per household each year, underscoring the urgent need for stronger supports, services, and meaningful treatments.