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
GET INVOLVED: Rare Disease Week 2026
Want to get involved? Visit our website to see all the different ways you can help the Batten disease community and BDSRA, whether it’s fundraising, raising awareness, advocating, or more. Learn More DON'T FORGET! You can order Panda Express online THIS FRIDAY, FEBRUARY 27, to support the BDSRA Foundation and families affected by Batten disease before Rare Disease Day. PLEASE SHARE to spread the word! Details
Batten Disease: Rare Disease Week 2026
Click below to learn more about what you can do for the Batten disease and rare disease communities this Rare Disease Week! SHOP There are three current shopping fundraisers that BDSRA will receive proceeds from! Order online from Panda Express on Friday, February 27, 2026 Shop the "Love is Blind" collection from Paper Clouds Apparel by March 4, 2026 Treat yourself to some sweets from See's Candies by March 21, 2026! [...]
