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 and Research Association (BDSRA)
2780 Airport Drive, Suite 342, Columbus, Ohio 43219
Call us toll-free at -800-448-4570
Email us at

Stay Connected to BDSRA

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

  • If you are a Parent or Caregiver of a loved one with Batten disease, you can connect with others like yourself in our Closed Facebook Group BDSRA on Facebook
  • Read past issues of the BDSRA newsletter “The Illuminator” to find out the latest updates in the Batten community BDSRA Newsletter
  • “Like” our BDSRA Facebook Page – open to all including family, friends and supporters BDSRA on Facebook
  • Attend the Annual BDSRA Family Conference, slated for July 19th- 22nd, 2018 at the Nashville Airport Marriott Hotel.  Last year’s conference had 450+ attendees!
  • Follow us on Twitter BDSRA on Twitter