ASXL RARE RESEARCH ENDOWMENT FOUNDATION
ASXL Rare Research Endowment Foundation
823890665
2018
Portland, ME 04112
arrefoundation.org
arrefoundation
arrefoundation
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News
Meet our Board of Directors! Sankar Madhavan joined the Board of Directors in 2023. His daughter Diya has Bainbridge-Ropers Syndrome (ASXL3). They live in Luxembourg. https://t.co/OLkJXKseY1 (tw)
Meet our Board of Directors! Daniel Ordower joined the Board of Directors in 2021. His son Asher has Bohring-Opitz Syndrome (ASXL1). Daniel is the treasurer. He and his family live in New York City. https://t.co/wGx5QZyT1z (tw)
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About the organization
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Supporting research and improving care for ASXL syndromes Were a familyled organization supporting research to increase the understanding of the ASXL gene family and improve care for those living with disorders related to the ASXL genes. Research Questions in ASXLRelated Disorders survey Deadline extended to Monday March 31 2025. The ARRE Foundation invites you to take part in an important research survey that has been guided by a dedicated team of ASXL parents and researchers over the last year. Your insights are invaluable to prioritizing the unanswered questions about ASXLrelated disorders and driving meaningful research forward.
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