Rare Disease Week 2024
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.
Watch the livestream of the special forum hosted by the White House Office of Science and Technology Policy below.
Wednesday, February 28
5:30 PM – 7:00 PM ET
Let’s make our voices heard and drive progress together.
#RareDiseaseWeek #CureAngelman #Angelmansyndrome #AngelmanSyndromeFoundation #NIH #FDA #RareDiseaseDay
Resources
Virtual Informational Sessions
Wednesday, February 28 at 1pm 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.
Thursday, February 29 at 9am – 5pm 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.
Friday, March 1 at 9am – 4:30pm ET
FDA Rare Disease Day – Don’t miss out on this chance to engage with experts. This year’s Rare Disease Day is dedicated to patients and health care professionals with panel discussions on important topics for our community.