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Join the BDSRA Community

Contact Us

Finding support for you and your family is essential as you cope with the many challenges associated with Batten disease.

BDSRA is here to help in many ways. We provide information about the disease and help families find and access a variety of community resources and programs. We offer guidance and emotional support, help you navigate difficult systems, and connect you with other families and experts in the field — via snail mail, email, by phone or in person:

Batten Disease Support, Research, and Advocacy Foundation (BDSRA Foundation)
P.O. Box 30049 Gahanna, OH 43230
Call us toll-free at -800-448-4570
Email us at info@bdsrafoundation.org

Stay Connected to BDSRA

Receive regular updates and information from BDSRA! Stay connected through our communications, social media outlets and special events:

Sign up for events, view the latest news, and check out our current advocacy efforts by visiting the BDSRA Linktree.
If you are a Parent or Caregiver of a loved one with Batten disease, you can connect with others like yourself in our BDSRA Closed Group on Facebook.
Sign up for the BDSRA Illuminator Newsletter and read past editions to find out the latest updates in support, research and advocacy the Batten community.