The Batten Disease Support and Research Association (BDSRA) was formed by a group of families in the U.S. and Canada with a mission to offer emotional support, provide information and referrals, and to educate others about Batten Disease. The Association assists with the National Batten Disease Registry which is maintained at the New York State Institute for Basic Research in Developmental Disabilities. BDSRA maintains a library of information on the disease; Helping Hands Information Sheets on topics such as seizure care, tube feedings and medications. Books on grief and coping with an ill child, and informational videocassettes are available on loan. Information on medical care, financial assistance, and funding/grants is available through the Association. Services are available at all levels of participation for a membership fee.
Pamphlets Serial Publication: B.D.S.R.A. Quaterly Newsletter; and Batten Disease pamphlets.
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