ARRE Foundation

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Learn more about ASXL-related disorders

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ASXL1/Bohring-Opitz Syndrome
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ASXL2/Shashi-Pena Syndrome
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ASXL3/Bainbridge-Ropers Syndrome
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Latest news

Aug 27, 2026

ARRE Foundation continues investment in foundational clinical research for ASXL-related disorders

The ASXL Rare Research Endowment (ARRE) Foundation has reaffirmed its commitment to clinical research infrastructure for ASXL-related disorders through continued funding of the ASXL-Related Disorders Natural History Study and Biobank at the University of California, Los Angeles (UCLA), led by Bianca Russell, MD. The Foundation is currently in the second year of a three-year, $180,000 funding commitment supporting the study, which serves as the primary clinical research resource for Bohring-Opitz Syndrome (ASXL1), Shashi-Pena Syndrome (ASXL2), and Bainbridge-Ropers Syndrome (ASXL3). The study combines two components: a longitudinal natural history study that … Continued

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Aug 13, 2026

U.S. Social Security Adds Bohring-Opitz Syndrome to Fast-Track Disability Program

The Compassionate Allowances program helps the SSA quickly identify disability claims involving conditions that clearly meet its standards for disability. For individuals with conditions on the list, claims can often be approved based on medical confirmation of the diagnosis, reducing the burden of proof and the time required to reach a decision. Once an individual has disability status, they may be eligible for disability benefits, including Supplemental Security Income (SSI). Families applying for disability benefits for a loved one with Bohring-Opitz Syndrome should clearly state in their application that the … Continued

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Jul 21, 2026

Updated GeneReviews provides important new guidance for Bohring-Opitz Syndrome care

The GeneReviews article for ASXL1-related Bohring-Opitz Syndrome was republished in June 2026, bringing together the latest clinical knowledge, research, and care recommendations into a single, authoritative, trusted, and expert-vetted resource. For rare disorders like Bohring-Opitz Syndrome, where relatively few individuals have been diagnosed worldwide, resources like GeneReviews play a vital role. They are widely used by geneticists, pediatricians, neurologists, therapists, and other healthcare professionals to guide diagnosis, clinical management, and long-term care. Families also rely on them to better understand the condition and to advocate for appropriate medical care. The … Continued

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