November is National Family Caregivers month. I feel like the AI engine has recognized my likes and swipes of late and has been filling my feed with a myriad of self care material. I love reading and digesting tidbits of […]
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It’s an exciting time in Angelman syndrome research, with multiple Phase 3 clinical trials likely to start over the next year. Phase 3 clinical trials are typically larger, which means more AS families may be eligible to participate in clinical […]
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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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