About Us
BDSRA is dedicated to funding research for treatments and cures, providing family support services, advancing education, raising awareness, and advocating for legislative action. Founded in 1987, by parents seeking to build a network for those diagnosed with Batten disease, BDSRA is now the largest support and research organization dedicated to Batten disease in North America. BDSRA believes that to effectively unravel the mysteries of Batten disease, the worlds of medical science, research, and families must work together toward a common goal: discover treatments and cures while assuring a better quality of life for those living with the disease.
Recent News
WATCH: BDSRA’s Noah Siedman Speaks at NewYorkBIO Patient Engagement Summit
BDSRA Foundation Database Manager Noah Siedman spoke at the NewYorkBIO Patient Engagement Summit last month about his own experiences engaging with hope as a rare disease sibling. He was introduced by BDSRA Board Treasurer Fred Surrey. Watch Noah's full talk below and click here to read his script.
Conference Registration is OPEN; The Design Contest Winner is…
Meet Us in St. Louis This July! Registration for the 2024 Annual Family Conference is officially OPEN! Take advantage of the Early Bird special that includes $5 off the $25 price of each adult registration by June 14. Join us in St. Louis July 12-14! Register, view the agenda, activities for SIBs and LGO, and more by clicking the button below. Conference Information The Winner of the 2024 International Batten Disease Awareness Day T-Shirt Design Contest is... [...]
