Make Your Voice Count
Whether it's meeting with lawmakers on Capitol Hill, contacting your state representative, or spreading awareness in your community — there are meaningful ways to advocate for the Angelman syndrome community at every level.
Congress
State
Join us in advocating for the rights and well-being of individuals with Angelman syndrome at the state level. Your voice can help shape policies that ensure access to vital services and support for our loved ones. Together, we can make a real difference in the lives of those with Angelman Syndrome and their families. Get involved today and be a part of this crucial movement for change.
Contact Your Local Representative
Contact your local representative
- States in session – when is a good time to contact your rep (timeline and calendars).
- Contact us to learn how to set up a meeting with your state rep.
- Draft letter to write to the state.
Request a State Proclamation for International Angelman Day
A proclamation is an official declaration issued by a government official, such as a governor, mayor, or county executive, to recognize a specific day, week, or month for awareness or celebration. Getting a proclamation issued by your state or local government can be a powerful way to raise awareness about Angelman syndrome and demonstrate community support. A perfect day to do this is for International Angelman Day, which is February 15th each year.
Note: Deadlines are driven by each state and are subject to change so plan ahead!
Rare Across America
Rare Across America hosted by the Everylife Foundation is the opportunity to meet with your Members of Congress at their in-district offices and educate them on the issues that are most important to the rare community by sharing your story.
Other State Calls to Action
TBD Medicaid, Insurance Coverage Actions, ACA, Prescription Drug Affordability Boards
FAQs
What is advocacy?
Advocacy is using your voice and your story to shape the decisions that affect the Angelman syndrome community. It can be as simple as emailing your elected officials, meeting with a Member of Congress, or requesting a proclamation in your state — you don’t need experience, the right words, or a policy background to make a difference. ASF and FAST provide the training, talking points, and support so you feel prepared every step of the way.
Who do I contact if I want to get involved in AS advocacy?
You’re already in the right place. Explore the ways to take action on this page — from sending an action alert to your elected officials to advocating at the state level — and sign up for Action Alerts to be notified when new opportunities come up. If you’d like a more personal hand getting started, email us at info@angelmanadvocates.org and we’ll help you find the best way to plug in.
I know someone in Congress — how do I connect with them?
A personal connection to a Member of Congress or their staff is one of the most powerful tools we have. If you have a relationship with a Representative, Senator, or someone in their office, email us at info@angelmanadvocates.org and let us know. We’ll help you make the most of it — whether that’s arranging a meeting, sharing talking points, or coordinating with our broader advocacy efforts.