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To be an international support and research networking organization for families of children and young adults with an inherited neurological degenerative disorder known as Batten Disease.
BDSRA(Batten Disease Support and Research Association) was created to provide information, medical referral and support along with furthering the effors of research to find a viable treatment and enentually eliminate Batten disease. It is the only family support organization in the United States, Canada, new Zealand and australia specific to Batten disease. The national headquarters are in Columbus, Ohio and is a 501(c)(3) non-profit organization with a medical advisory group and area chapters.
- Katie Godfrey
- (847) 695-5453
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