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.

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.

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

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.

Latest news

Oct 9, 2026

ARRE Foundation awards grant to Dr. Robert Illingworth to investigate how ASXL proteins shape brain development

The ASXL Rare Research Endowment (ARRE) Foundation has awarded a $60,000, one-year research Discovery Grant to Rob Illingworth, PhD, of the University of Edinburgh to support a new project titled, Investigating ASXL Function and Dysfunction in Brain Development. Dr. Illingworth is an internationally recognized researcher at the University of Edinburgh, where his laboratory studies how epigenetic regulation controls gene activity during development and how disruption of these processes contributes to human disease. The grant reflects the ARRE Foundation’s continued investment in early-stage, mechanism-focused research that addresses some of the most … Continued

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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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