Policy Priorities

These are the legislative priorities we bring to Capitol Hill each year — from federal funding requests to the bills we're actively championing for the Angelman syndrome community.

Our Current Legislative Asks at a Glance

Our 2026 congressional asks focus on securing FY27 appropriations language to advance AS research and drug development across the DOD, FDA, NINDS, and NCATS — including continued research funding, patient-centered regulatory review, and support for gene-targeted therapies.

FY26 Appropriations Requests

Our FY27 appropriations requests call on Congress to sustain AS research funding through the DOD, urge the FDA to incorporate patient experience data into regulatory decisions, and push the NIH to prioritize natural history studies and gene-targeted therapies.

Medicaid

Medicaid provides essential home care services that individuals with Angelman syndrome depend on throughout their lives. We’re urging Congress to protect eligibility, maintain benefits, and reduce barriers for families.

Credit for Caring

The Credit for Caring Act would provide a $5,000 tax credit for working family caregivers — a meaningful offset for AS families facing an estimated $80,000 per year in caregiving costs. We’re urging Congress to pass it into law.

Legislation We Are Currently Supporting

Care and Caregiver Impact

Alleviating Barriers for Caregivers (ABC) Act (H.R. 2491/S. 1227).
Credit for Caring Act of 2024
(H.R. 2306/S.9).
CONNECT Act (S.1261).
Accelerating Kids Access to Care Act
(H.R. 1509/S. 752).

Treatments

Orphan Cures Act
(H.R. 946).
Give Kids a Chance Act
(H.R. 1262/S. 932).

SSI

Give Kids a Chance Act
(H.R. 1262/S. 932).

House Letters

Bipartisan letters signed by Members of Congress requesting appropriations report language to advance Angelman syndrome research and drug development across federal agencies.

Angelman Syndrome FY26

Bipartisan letter signed by 14 Members of Congress requesting FY26 appropriations report language directing NINDS to support clinical outcome measure and biomarker development and urging the FDA to utilize patient experience data in regulatory decision-making for Angelman syndrome.

Angelman Syndrome FY27

Bipartisan letter signed by 28 Members of Congress requesting FY27 appropriations language across four agencies: continued DOD research eligibility, FDA recognition of the EL-PFDD Voice of the Patient report, NINDS funding for natural history studies, and NCATS support for gene-targeted and gene-editing research in Angelman syndrome.

Letters Signed

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.