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 and continuously expanding the network of clinicians and scientists who are committed to studying all aspects of 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.

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