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.
Updated tumor screening guidelines
In May 2024, the ARRE Foundation’s Medical and Scientific Advisory Board released update tumor screening guidelines for children with Bohring-Opitz Syndrome (ASXL1-related disorder).
Give the gift of a brighter future.
Make your donation to support research and education today.
ASXL syndromes
-
ASXL1/Bohring-Opitz Syndrome
-
ASXL2/Shashi-Pena Syndrome
-
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
Keep up with us on Instagram
Invest in stronger futures
Your recurring donation by credit card provides a steady stream of support for our programs and research. Set up your automated donation today and join our dedicated group of donors in the Sustainers Circle.