ARRE Foundation

The ASXL Rare Research Endowment (AЯRE) Foundation will provide sustainable support for evidence-based research that will increase our understanding of the ASXL genes and improve the treatment of individuals with congenital ASXL mutations.

Our ASXL families — who have Bohring-Opitz Syndrome (ASXL1), Bainbridge-Ropers Syndrome (ASXL3) and Shashi-Pena Syndrome (ASXL2) – face extraordinary challenges and uncertainty. AЯRE will bring together the medical and scientific leaders to study ASXL genes and clinical challenges so that we can improve care management strategies, assist with patient advocacy, and ultimately introduce potential treatments/cure.

We are on this journey together and need your help to realize this vision.  Please consider to rally family & friends to support this important cause through volunteer efforts and donations.

AЯRE has more exciting news and actionable information ahead.  Check out the AЯRE website to learn more about our plans, join AЯRE on Facebook @arrefoundation and sign up for the newsletters.