As members of Congress return from the August Congressional Recess, we have an important opportunity to fight for policies and programs that are important to people with disabilities and their families. Two critical programs—Medicaid home and community-based services (HCBS) […]
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ASF and FAST applaud FDA’s recent announcement regarding the establishment of a Rare Disease Innovation Hub. The Hub is an intercenter collaboration to address common scientific, clinical, and policy issues related to rare disease product development, including relevant cross-disciplinary approaches […]
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It’s a new school year, and the ASF is here to support you and your child in every way possible. Here you’ll find a collection of resources designed to help you, your child, and their educators make this school year […]
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AS Advocates Achieve Initial Wins Resulting from Inaugural Congressional Advocacy Day Thanks to the efforts of our amazing AS advocates, FAST and ASF are proud to announce that we have achieved initial success in our fiscal year (FY) 2025 congressional […]
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ASF & FAST joined dozens of other organizations to advocate for federal efforts aimed at supporting caregivers. Both organizations signed a letter supporting the establishment of The Office of Caregiver Health, and a letter endorsing the Alleviating Barriers for Caregivers […]
Read moreOn March 7, 2024, Angelman syndrome advocates from around the United States met in Washington, D.C. for the Inaugural Angelman Syndrome Congressional Advocacy Day. In preparation for the event, ASF, FAST and our partners, Faegre Drinker and Soapbox, led a […]
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FAST and ASF will be joining numerous other rare disease groups on Capitol Hill in person. While we are in DC, we invite the Angelman syndrome community to register for informative sessions with the NIH, Everylife Foundation and FDA and […]
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ASF and FAST are proud to be among over 160 patient advocacy organizations urging Congress to consider two technical corrections to address the unintended consequences of the orphan drug exemption of the Inflation Reduction Act that will help preserve hope and […]
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