Letters Supported by ASF & FAST
Letters signed in coalition with other rare disease and patient advocacy organizations in support of legislation and policies that impact the Angelman syndrome community.
March 2026: Lowering Costs for Caregivers Act Letter to Congress
Coalition letter urging Congress to pass legislation allowing family caregivers to use health savings and flexible spending accounts for a parent or parent-in-law’s qualified medical expenses.
January 2026: Urge to advance an Act to reauthorize the Pediatric Disease PRV program
Coalition letter urging the Senate to pass the Give Kids a Chance Act and reauthorize the Rare Pediatric Disease Priority Review Voucher program, a proven incentive for developing therapies for children with rare diseases.
November 2025: Request to enact the 2026 Defense Appropriations Act for FY2026
Coalition letter urging Congress to pass the FY2026 Defense Appropriations Act to protect Congressionally Directed Medical Research Programs, which lost funding for 23 of 35 programs under the previous year’s continuing resolution.
Sept 2025: Supports reauthorize the Rare Pediatric Disease Priority Review Voucher (PRV)
Coalition of 190 organizations urging Congress to pass the Give Kids a Chance Act before the PRV program’s lapse eliminates a key incentive for developing treatments for children with rare diseases.
June 2025: Request to FDA to convene engagement with patient advocacy organizations
Coalition letter to FDA Commissioner Makary requesting a town hall-style meeting series to ensure rare disease patient advocacy organizations have direct, interactive engagement with the agency.
May 2025: Newborn Screening Coalition Letter
Coalition of 272 organizations urging HHS Secretary Kennedy to reinstate the Advisory Committee on Heritable Disorders in Newborns and Children and preserve federal newborn screening infrastructure.
April 2025: Coalition for Health Funding
Coalition of 534 organizations opposing the Administration’s proposed one-third cut to HHS discretionary spending and urging Congress to protect funding for NIH, FDA, CDC, and other critical health agencies.
March 2025: Re-Introduction of the Accelerating Kids' Access to Care Act
Coalition letter supporting bipartisan legislation to streamline out-of-state Medicaid provider enrollment for children with complex medical conditions who need specialized care unavailable in their home state.
January 2025: Rare Disease Community Letter to President Trump
Coalition of 209 organizations presenting policy priorities to the incoming administration, including preserving therapeutic development incentives, supporting the FDA Rare Disease Innovation Hub, modernizing newborn screening, and improving access to approved therapies.
January 2025: Continued Support for the Credit for Caring Act
Coalition letter urging the 119th Congress to pass legislation creating a $5,000 non-refundable tax credit for working family caregivers who spend an average of 26% of their income on caregiving expenses.
December 2024: Request to Support the Accelerating Kids' Access to Care Act
Coalition of 230 organizations urging Congressional leaders to pass the bill before the end of the 118th Congress, following its unanimous passage in the House.
November 2024: Congressional Leaders on 3 Rare Disease Bills
Coalition letter urging Congress to pass three bills before year-end: reauthorization of the Rare Pediatric Disease PRV program, the Medicaid Value-Based Payments for Patients Act, and the Accelerating Kids’ Access to Care Act.
June 2024: Creating Hope Reauthorization Act
Coalition of 131 organizations urging the Senate to reauthorize the Rare Pediatric Disease PRV program before its September 2024 expiration, a program that has brought therapies to market for children affected by nearly 40 rare diseases.
June 2024: Caregiver Health Letter to President Biden
Coalition of 167 organizations requesting the creation of an Office of Caregiver Health within HHS to coordinate federal caregiver support programs and advance the health and well-being of America’s 53 million family caregivers.
February 2024: Credit for Caring Act Endorsement
Coalition letter endorsing the bipartisan Credit for Caring Act, which would create a $5,000 federal tax credit for eligible working family caregivers to offset the financial burden of providing unpaid care.
About Angelman Syndrome
Below is brief overview of Angelman syndrome, information about our urgent need for more research funding in AS, and an overview of the two Angelman syndrome patient advocacy organizations who are united in their commitment to making a significant impact in the community.