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Rare Disease Week 2024

Rare Disease Week is quickly approaching, and we're thrilled to announce that both FAST and ASF will be joining numerous other rare disease groups on Capitol Hill in person. While we are in DC, we invite the Angelman syndrome community to register for informative sessions with the NIH, Everylife Foundation, and FDA and help spread awareness to the 7,000 rare diseases worldwide.

Let's make our voices heard and drive progress together.

#RareDiseaseWeek #CureAngelman #Angelmansyndrome #AngelmanSyndromeFoundation #NIH #FDA #RareDiseaseDay


Virtual Informational Sessions:

Wed., Feb 28 at 1:00pm ET

  • This year’s Rare Disease Congressional Caucus Briefing on Capitol Hill will be moderated by Ryan Fischer, FAST’s Chief Operating Officer. The briefing will discuss legislation and issues that impact the entire rare community. Please check out Everylife Foundation for Rare Disease’s event page to register for this and other virtual events.

  • Learn More & Register:

Thurs., Feb. 29 at 9:00am-5:00pm ET

  • Rare Disease Day at NIH - Dive into insightful sessions and discussions featuring panel discussions, rare diseases stories, in-person exhibitors and scientific posters, and an art exhibition.

  • Learn More & Register:

Fri., March 1 at 9:00am-4:30pm ET