Supporting research and improving care for ASXL syndromes
We’re a family-led 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.
July 18-21, 2024
2024 ASXL Research Symposium and Family Conference
Baltimore, Maryland, U.S.A.
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Fireside chat
Updates from the ARRE Foundation
Recorded November 17, 2023
ARRE Foundation founder, chair, and Bohring-Opitz Syndrome parent Laura Badmaev shares a fireside conversation with ARRE Foundation Executive Director Amanda Johnson. This video update for ASXL families includes discussion of family resources, the state of ASXL research including the drug development process, and how families can get involved in research.
ASXL syndromes
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ASXL1/Bohring-Opitz Syndrome
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ASXL2/Shashi-Pena Syndrome
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ASXL3/Bainbridge-Ropers Syndrome
2022 Annual Report
Our annual report to the ASXL community
We’re growing the number of doctors and researchers who study ASXL-related disorders
When the ARRE Foundation was founded in 2018, there were 10 known doctors and researchers with an interest in ASXL-related disorders. We have grown the network to 73 researchers and counting through personal outreach, our quarterly research discussions, and annual ASXL Research Symposium.
ASXL Research Network
Article
What causes ASXL-related disorders?
Newly diagnosed
Has someone you love just been diagnosed with an ASXL-related disorder?
Find care
Use the ASXL Care Directory to find doctors, therapists, and other medical professionals recommended by families of individuals living with ASXL-related disorders
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