Join our team
The ASXL Rare Research Endowment (ARRE) Foundation is a family-led patient advocacy organization founded in 2018 by parents to support research and education for individuals and their families living with ASXL-related disorders. These three neurodevelopmental disorders are caused by variants in the three ASXL genes: ASXL1/Bohring-Opitz Syndrome, ASXL2/Shashi-Pena Syndrome, and ASXL3/Bainbridge-Ropers Syndrome. These complex, multisystem disorders have a high burden on patient and family quality of life. We estimate that there are approximately 500 individuals diagnosed globally and the rate of diagnosis is increasing rapidly as more families have access to modern, affordable genetic testing.
While research interest in ASXL-related disorders is growing rapidly, there remains little published research describing the disorders and how to approach care of their many symptoms. There are currently no treatments other than managing symptoms as they arise. Be a part of our staff team to catalyze our journey to find treatments and define the natural history of ASXL-related disorders.
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