If you’ve ever wished decision-makers truly understood what Angelman syndrome means for real families, this is how we make that happen.
Join us in Washington, DC for a powerful day on Capitol Hill to meet with your state’s elected officials, share your story, and help push for the federal attention Angelman syndrome deserves.
When lawmakers hear directly from parents, grandparents, siblings, and friends, Angelman syndrome stops being a rare disease on paper and becomes a person they remember when policy decisions are made. Because of the incredible advocacy our community has shown up with over the past two years, we’ve already made real progress in DC, including:
New report language for Angelman syndrome, providing direction to NIH and FDA regarding AS priorities
Maintaining Angelman syndrome as an eligible condition for Department of Defense funding
This is our third year returning to Capitol Hill, and we want you with us.
New to advocacy? You’re welcome here.
You do not need experience, the “right” words, or a background in policy. You bring your story and your voice. We’ll provide training, talking points, and support so you feel prepared and confident.
Event Schedule:
Tuesday, March 3: Training, 3:00–8:00 pm
Wednesday, March 4: Meetings on Capitol Hill, 8:00 am–5:00 pm
Every voice adds strength. Every meeting builds relationships. And those relationships help keep Angelman syndrome visible where it counts.