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.
About the Conference
The BDSRA’s signature event each year is our family conference. Last year over 450 family members, children, and researchers attended to learn about patient care, education, and the latest research. As in years past, you’ll have access to experts sharing research posters and helping to answer questions, connect with other parents, and attend sessions while medical care is provided for your child, and of course, the SIB program’s outings and sessions are always great fun!