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Changing the future for ASXL-related disorders

The ARRE Foundation was founded by parents who refused to accept “unknown” as the final answer. We’re here to support families, drive research, and create a future with real treatment options for ASXL-related disorders.

ARRE Foundation: Advancing research for ASXL-related disorders

No roadmap? We’re building one

When our children were diagnosed, there was no clear path forward—so we created one. The ARRE Foundation supports families while building the research foundation needed to discover treatments and define standards of care for ASXL-related disorders.

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Our parallel path mission

Supporting and engaging families

We know research breakthroughs take time – so we meet families where they are today. Our programs provide education, peer support, and a strong community to lean on through every stage of the ASXL journey.

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Catalyzing and driving research

With few commercial incentives for ultra-rare disorders, we fill the gap. We fund high-impact projects, connect global researchers, and build the infrastructure needed to turn discoveries into real therapies for ASXL-related disorders.

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Led by families, driven by purpose

From our board to our research priorities, families are at the heart of everything we do—including funding, decision-making, and shaping the future of ASXL care.

Meet our team

Get to know us

Annual report

2025 State of the Organization update

Our partners

Our impact

$1.3m

committed to research initiatives

researchers in our ASXL research network

a 780% increase since 2018

230+

community members

actively engaged in supporting our mission

Join our team

The ARRE Foundation is supported by a passionate, growing team of professionals committed to advancing our research mission and supporting families affected by ASXL-related disorders.

We are not currently hiring for paid positions at this time, but we are always looking for volunteers.

Volunteer opportunities

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

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

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