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
The Latest BDSRA & Batten Disease Community Events and Updates
Included in this email update: Batten Disease Global Research Initiative Update The return of the International Batten Disease Awareness Day T-Shirt Design Contest Conference Grant applications Rare Disease Week Recap Fam Funds Update Newsletter Update Read below to catch up on the latest news and events in the Batten disease community! It's Brain Awareness Week! It’s Brain Awareness Week – a global campaign to foster public enthusiasm and support for brain science. Let’s take some time [...]
IT’S RARE DISEASE DAY! 🦓 Here’s what we got going on
THERE'S LOTS GOING ON! TODAY'S Nationwide Panda Express Fundraiser FINAL DAY to contact your reps using our Advocacy Module A clinical update Rare Disease Week highlights & reports A SIBs event TOMORROW (Saturday) Read below to catch up on the latest news and events and what you can do to advocate for the Batten disease community. BIG FUNDRAISER TODAY! Support BDSRA’s mission and help families affected by Batten disease by ordering Panda Express online or in the [...]
