This guide highlights key factors and important considerations for healthcare professionals involved in the care of individuals with ASXL-related disorders (Bohring-Opitz Syndrome, Shashi-Pena Syndrome, and Bainbridge-Ropers Syndrome), with emphasis on the following:
- Symptom management
- Learning and development
- Coordination of care
This guide also includes references to recently published clinical studies to support care management, the ASXL Care Directory with other expert clinicians and therapists, and how to help your patient enroll in the ASXL-Related Disorders Natural History Study.
Published: July 2024
Financial support for developing and producing this guide was made possible by the American Legion Child Well-Being Foundation.
The information presented here is for educational purposes only. This information is not medical advice and should not be treated as such. You should always talk to your or your family member’s health care professionals for diagnosis and treatment, including information regarding which drugs or treatment may be appropriate for you or your family member. We do not represent or warrant that any particular treatment is safe, appropriate or effective for you or your family member. In the event of a medical emergency, you should contact your doctor immediately or call your local emergency service.
