At a moment of unprecedented momentum in Angelman syndrome research and therapy development, we must not let up on either government or private investment. FAST and ASF are concerned about the impact of the recent reductions-in-force (RIFs) across critical federal […]
Read moreCommunity Update: New Insights into Health and Prevention in Angelman Syndrome We want to take a moment to acknowledge a recently published study that explores mortality risks in individuals with Angelman syndrome (AS). While this is a sensitive topic, it […]
Read morehttps://youtu.be/fIQroLWPf8Q As we prepare for the second Angelman Syndrome Congressional Advocacy Day on March 5, 2025, the FAST and ASF teams want to assure you of our steadfast commitment and focus on the priorities that matter most to families. […]
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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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