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
FDA Approves BioMarin’s BRINEURA® for Children Under 3 Years with CLN2 Batten Disease
Read the following press release and information below courtesy of BioMarin. Read the original press release by clicking here. SAN RAFAEL, Calif., July 24, 2024 /PRNewswire/ -- BioMarin Pharmaceutical Inc. (Nasdaq: BMRN) today announced that the U.S. Food and Drug Administration (FDA) has approved the company's supplemental Biologics License Application (sBLA) for BRINEURA® (cerliponase alfa) to slow the loss of ambulation in children of all ages with neuronal ceroid lipofuscinosis type 2 (CLN2 disease), also known as tripeptidyl peptidase 1 (TPP1) [...]
NEW Upcoming Batten Disease Community Event; 2025 Family Conference Location
Gather your pups and pals because it’s almost time for the 2nd Annual BDSRA Dog Days of Summer Party! This virtual party will take place via Zoom on Sunday, August 11, at 4 PM EDT. FREE party kits are available for families to order during registration until 11:59 PM EDT on Sunday, July 28. Party kits are reserved for U.S. and Canadian families only. Click the button below to register! Click Here to Register The Location [...]
