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.

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2026 BDSRA CONFERENCE REGISTRATION IS OPEN | Batten Disease

May 13th, 2026|

    Join us in Chicago this July for the 2026 BDSRA Annual Family Conference! The Conference brings together domestic and international families affected by Batten disease, researchers, clinicians, and industry professionals. The weekend includes research presentations, activities for siblings and bereaved parents, childcare, research studies, and so much more.   REGISTER TODAY  

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