ASXL Professional Network

The ASXL Professional Network is a group of physicians, specialists, scientists, and researchers who care for ASXL syndrome patients or study aspects of ASXL disorders. The goal of this network is to connect the people who need to learn about ASXL syndromes with the people who know the most about ASXL syndromes.

Ask us to connect you

If you have a Bohring-Opitz, Shashi-Pena, or Bainbridge-Ropers Syndrome patient on your caseload, we can try to connect you with another specialist or therapist who has experience treating similar patients. We have successfully connected several speech-language pathologists who are working with BOS patients.

If you are working on a research project and are seeking collaborators, we are happy to facilitate connections to other investigators and resources that may be helpful to you.

Please contact Amanda Johnson at amanda@arrefoundation.org to inquire about connections.

ASXL Research Symposium

The ASXL Research Symposium is held annually. The next in-person meeting will be held in Boston in July 2023. In even-numbered years, it is held in conjunction with the ASXL Family Conference and provides an opportunity for clinicians, investigators, patients, and families to meet each other. This meeting also provides an opportunity for investigators to collect samples and data from families.