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ASXL Rare Research Endowment Foundation

The ASXL Rare Research Endowment (ARRE) Foundation is a family-led patient advocacy organization focused on advancing knowledge and understanding of ASXL-related disorders (Bohring-Opitz Syndrome, Shashi-Pena Syndrome, and Bainbridge-Ropers Syndrome) with the goal of developing effective therapies and medical interventions. We are raising funds for research, building the network of clinicians and scientists who are studying the ASXL gene family and their associated disorders, developing resources for clinicians and parents to improve clinical outcomes, and facilitating collaborations among health professionals who have experience treating ASXL syndromes.


EIN 82-3890665
Medical Specialty Research
P.O. Box 4662
Portland, ME 04112
United States of AmericaGoogle Maps
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2.73 yrs

Data from 2022 via Guidestar

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