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ASXL Rare Research Endowment Foundation

Portland, ME
|
www.arrefoundation.org

    • About Us

    The ASXL Rare Research Endowment (ARRE) Foundation supports research and education for Bohring-Opitz, Shashi-Pena, and Bainbridge-Ropers Syndromes, extremely rare genetic disorders that most doctors have never heard of, let alone know how to treat.

    The ARRE Foundation is providing education to parents and caregivers about managing their loved ones’ many medical complications, bringing more researchers to the table to study these syndromes, and encouraging families to actively participate in research.

    The ASXL Rare Research Endowment (ARRE) Foundation supports research and education for Bohring-Opitz, Shashi-Pena, and Bainbridge-Ropers Syndromes, extremely rare genetic disorders that most doctors have never heard of, let alone know how to treat.

    The ARRE Foundation is providing education to parents and caregivers about managing their loved ones’ many medical complications, bringing more researchers to the table to study these syndromes, and encouraging families to actively participate in research.

    Issue Areas Include

    • Disability
    • Health & Medicine
    • Research & Social Science
    • Science & Technology

    Location & Contact

    Illustration

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