Imagine getting a complicated diagnosis for your child, or in our case both of your kids, and then learning there’s no treatment for it. And then imagine learning that there are only a handful of research papers to guide your child’s many doctors as they figure out how to care for the person you love most.

That’s the difficult reality for families like us, and hundreds of other families around the world living with ASXL-related disorders. But with the ARRE Foundation there is hope for answers.

The ARRE Foundation is bringing together the doctors and researchers needed to build the body of medical knowledge that will guide the care of kids like our and help them live to their fullest potential.

Please invest in families like ours by making your donation today.

The ASXL Rare Research Endowment (ARRE) Foundation is a family-led patient advocacy organization focused on advancing knowledge and understanding of ASXL-related disorders (Bohring-Opitz Syndrome, Shashi-Pena Syndrome, and Bainbridge-Ropers Syndrome) with the goal of developing effective therapies and medical interventions. 

We are raising funds for research, building and continuously expanding the network of clinicians and scientists who are committed to studying the ASXL genes and their associated disorders, developing resources for clinicians and parents to improve clinical outcomes, and facilitating collaborations among health professionals who have experience treating ASXL syndromes.