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Strengthen the Evidence for Maternal and Child Health Programs

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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: Brain diseases, Batten disease, 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
   

This project is supported by the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS) under grant number U02MC31613, MCH Advanced Education Policy, $3.5 M. This information or content and conclusions are those of the author and should not be construed as the official position or policy of, nor should any endorsements be inferred by HRSA, HHS or the U.S. Government.