Search Results: MCH Organizations

This list of organizations is drawn from the MCH Organizations Database. Contact information is the most recent known to the MCH Digital Library.

Displaying records 1 through 2 (2 total).

Batten Disease Support and Research Association (BDSRA)

Annotation: The Batten Disease Support and Research Association (BDSRA) sponsors research on Batten disease and provides support, referrals, and information to families affected by the disease. Publications include Batten Disease: Neuronal Ceroid Lipofuscinoses and a newsletter. Some materials are available in Spanish, French and other languages. BDSRA also sponsors conferences, training seminars, and workshops.

Keywords: Batten disease, Brain diseases, Medical research, Support groups, Nervous system diseases, Neuronal ceroid lipofuscinoses

National Batten Disease Registry

Annotation: The National Batten Disease Registry provides information on Batten Disease, offers referrals to local resources, and maintains a national registry. The organization also offers neurological evaluation, genetic counseling, and diagnostic testing. Services to consumers also include reference information and publications. It is a program at the Institute for Basic Research in Developmental Disabilities.

Keywords: Batten disease, Brain diseases, Genetic counseling, Information services, Nervous system diseases