What if your loved one had a genetic disorder so rare that no one had ever heard of it before — let alone knew how to treat it? For many families with Bohring-Opitz Syndrome, Shashi-Pena Syndrome, and Bainbridge-Ropers Syndrome, this is their reality. The ASXL Rare Research Endowment Foundation is trying to change that. Your contribution helps support research and education that improves the quality of life for families living with an ASXL syndrome. From research grants for scientists to educational events for families, your gift to the ARRE Foundation is supporting a brighter future full of knowledge and hope.
This 45-second video explains why the ARRE Foundation exists and how your support can help us meet our goal to find more answers through research.
Published: November 2022
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.
