ARRE Foundation

Transforming what's possible for ASXL-related disorders

The ARRE Foundation brings families and researchers together to improve care today and advance breakthroughs for tomorrow.

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Newly diagnosed? You are not alone.

Has someone you love just been diagnosed with an ASXL-related disorder? Welcome to the ASXL community. We are so glad you found us.

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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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2026 ASXL Research Symposium and Family Conference

Thank you to everyone who joined us for the 2026 ASXL Research Symposium and Family Conference. Researchers, clinicians, families, and caregivers came together to share knowledge, participate in research, build connections, and help advance our understanding of ASXL-related disorders.

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For patients and families

Our family-focused programs provide education, support, and community while we drive the research that will lead to better treatments and outcomes for individuals with ASXL-related disorders.

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For doctors and researchers

We catalyze the growth of the ASXL research community as active partners in building the global research infrastructure, supporting research studies, and providing venues to share findings and spark collaboration.

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Featured resources

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Research

Discover how families can drive progress by participating in research and explore current studies working to unlock a deeper understanding of ASXL-related disorders.

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ASXL Resource Library

The ASXL Resource Library includes free articles, videos, and other resources on a wide range of topics.

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Fundraise

Find creative fundraising ideas and helpful tools from the ARRE Foundation to support your efforts in advancing research and care for ASXL-related disorders.

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Find care

The ASXL Care Directory includes a list of doctors and other healthcare professionals around the world who have been recommended by ASXL families.

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Get involved

Explore ways to volunteer, fundraise, or donate – because every step forward in ASXL research and support is powered by families like yours.

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Upcoming events

Join our online and in-person programs, including expert-led webinars, family discussion groups, research updates, and our flagship ASXL Research Symposium and Family Conference.

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Latest news

Sep 24, 2026

What we've learned from families participating in ASXL research

Insights from data collected at the ASXL Family Conference The August 2026 study newsletter provides early insights into some of the research data collected at the 2026 ASXL Family Conference in June. Participating families completed questionnaires about communication, sleep, and feeding that are already helping researchers identify where future research could have the greatest impact. The following insights are drawn from participants with ASXL1, ASXL2, and ASXL3-related disorders. The number of participants from each group (ASXL1, ASXL2, or ASXL3) is indicated by the “N” value for each disorder below. Because … Continued

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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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