Congressional Advocacy Day
Angelman advocates from around the US are invited to Washington, D.C. every March to help amplify our federal legislative asks to elected officials together as one united community.
Join Us in Washington, DC
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.
The History
On March 7, 2024, Angelman syndrome advocates from around the United States met in Washington, D.C. for the Inaugural Angelman Syndrome Congressional Advocacy Day. As the historic day began on Thursday, 65 advocates representing 25 states and Washington D.C. migrated to Capitol Hill to meet with their Members of Congress. After the success of the inaugural event, this event has more than doubled in participation, and our state coverage has increased 48%! This event attracts community members looking to come together as a united front on behalf of their loved ones living with Angelman syndrome.
Advocacy Successes
| 2026 | Recap and Successes |
|---|---|
| 2025 | Recap and Successes |
| 2024 | Recap and Successes |
Big Wins as of February 2026
Congress has passed key Fiscal Year 2026 (FY26) funding bills – all three Angelman priorities were included. Thank you to our incredible advocates and bipartisan champions for making this possible.
Because of your advocacy, Angelman syndrome remains eligible for federal research funding through the DOD, and Congress has directed NIH and FDA to take concrete steps to advance research and drug development.
Included in the funding package were also key healthcare provisions FAST and ASF have been advocating for alongside partner organizations. These provisions included: extending the FDA’s Rare Pediatric Priority Review Voucher (PRV) program to incentivize rare pediatric drug development, reducing Medicaid barriers for children who must travel across state lines for specialized care, and continuing Medicare coverage of telehealth services.
FAQs
For a full list of FAQs, click here.
Who should attend?
Parents of individuals living with Angelman syndrome, as well as grandparents, aunts, uncles, siblings, and friends. We also welcome clinicians and researchers – Anyone can be a good advocate!
FOR INDUSTRY PARTNERS, if you’re interested in attending, please reach out to info@angelmanadvocates.org (opens in a new window) for your registration link.
What time should I arrive?
Advocacy training is from 3:00pm-8:00pm EST on training day at the hotel and meetings with your elected officials will be all day on the following day between 8:00am-5:00pm EST
How much does it cost to attend?
Registration for the event is free. Dinner on training day and a light breakfast on meeting day will be provided. All other expenses which can include but are not limited to Ubers, flights, accommodations, and additional meals are your responsibility.
Should I bring a minor or my loved one living with AS?
Congressional Advocacy Day on Capitol Hill can be a busy and potentially overwhelming experience with a lot of walking, meetings, and interactions in a fast-paced environment – for everyone. So deciding on whether to bring your loved one living with Angelman syndrome and/or their sibling(s), is a personal decision for each family.
Siblings and individuals living with AS joining the meetings can have a huge impact. Their presence can help legislators and staff truly connect with the reason we’re advocating—it makes the mission very real.
If you think that your child can tolerate these kinds of settings and you feel comfortable managing their needs during the day while focusing on the meetings, having them there can be incredibly impactful.
That said, it’s equally okay to decide not to bring them. Your ability to focus on the advocacy conversations and share your story might be easier without the additional demands of caregiving in a new environment. Families are welcome to bring a dedicated caregiver, having them join you at training and on Capitol Hill as an added support system for your family.
If you are considering this as a family, please see the Caregiver Information Guide (PDF, opens in a new window) for more information before registering.