A new digital home for the ASXL community

We’re proud to share that the ASXL Rare Research Endowment (ARRE) Foundation has launched a brand-new website designed to better serve our community of families, caregivers, clinicians, and researchers.

From the beginning, our mission has been clear: to support research and improve care for individuals living with ASXL-related disorders, including Bohring-Opitz Syndrome (ASXL1), Shashi-Pena Syndrome (ASXL2), and Bainbridge-Ropers Syndrome (ASXL3). This new website is one way we’re making that mission tangible: by providing families with trusted information, practical resources, and accessible education, all in one place.

What’s new

The redesigned website offers improved functionality and user experience, with content tailored to the unique needs of our community:

• ASXL Resource Library – Our flagship feature is a robust, searchable new library of tools, guides, and materials created to support parents and caregivers in managing the complex symptoms of ASXL-related disorders.
• Professionals section – We’ve built a dedicated space for clinicians and researchers, providing educational content and resources for researchers that will help improve understanding of ASXL-related disorders and, in turn, improve the quality of care delivered to affected individuals.
• Stronger connection to our mission – The website highlights the ways the ARRE Foundation is evolving and growing. With the recent expansion of our Medical and Scientific Advisory Board and the appointment of our Chief Scientific Officer, Dr. Karen Ho, we are laying the groundwork for future clinical trials while staying true to our family-led roots.

This new digital home reflects not only where we are today but also where we are going as a community. We invite you to explore the new website, discover the resources available, and share it with your networks.