Congratulations, Angelman syndrome community advocates.
Today, Congress passed the remaining fiscal year (FY) 2026 appropriations bills—legislation that funds federal programs—into law, and all three of our priorities were included. This means that AS will continue to be eligible for specific federal research dollars and that Congress has instructed the National Institutes of Health (NIH) and the Food and Drug Administration (FDA) to take steps to advance AS research and drug development.
This success was made possible by your advocacy last March and by leadership from our congressional champions, particularly Rep. Troy Balderson (R-OH) and Rep. Angie Craig (D-MN), who led a letter in support of our requests.
The bill also included important legislative priorities that FAST and ASF support, detailed below. Congress passed into law:
FY26 Angelman-Specific appropriations priorities
Keeps Angelman syndrome on the list of conditions eligible to apply for Department of Defense (DOD) medical research funding
Urges FDA to prioritize patient experiences in regulatory decision-making
Urges NIH to support a convening to identify and advance biomarkers and outcome measures for AS
An extension of the FDA rare pediatric priority review voucher (PRV) program, which incentivizes companies to develop drugs for rare pediatric diseases
A provision to reduce bureaucracy for children on Medicaid who need to travel across state lines to receive specialized care
A provision to continue to allow the Medicare program to cover telehealth services
Additionally, the passage of this bill unlocked $370 million in funding for the Department of Defense Peer-Reviewed Medical Research Program (PRMRP). AS researchers should be prepared to apply for FY26 funds in the coming months. We expect the application timeline and process to be similar to the FY25, which means a tight turnaround for applications.
Join us in Washington this March: Preparation for FY2027 appropriations requests and our AS Congressional Advocacy 2026 are fully underway. Please sign up to join us in DC March 3-4, 2026! We must keep the momentum going and keep Angelman syndrome priorities front and center.
For more information or to get involved in advocacy, please email Ryan Fischer (COO, FAST) and Amanda Moore (CEO, ASF) at info@angelmanadvocates.org
Prior Updates: