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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).

Tuberous Sclerosis Alliance

Annotation: The Tuberous Sclerosis Alliance, formerly the National Tuberous Sclerosis Association, is a voluntary nonprofit organization formed in 1974 by concerned parents. Its mission is to provide a better quality of life for those affected by tuberous sclerosis (TS) and to encourage research and education which will prevent future generations from experiencing the tragedy of this disease. Services to consumers include referrals, publications, and reference information. Materials are available in Spanish. The alliance publishes brochures, fact sheets, and a newsletter and also sponsors training seminars, workshops, and regional and national conferences.

Keywords: Tuberous Sclerosis, Information services, Medical research, Nervous system diseases, Support groups

Tuberous Sclerosis International (TSI)

Annotation: Formed in 1986, Tuberous Sclerosis International (TSI) is a worldwide organization of national tuberous sclerosis associations. This organization seeks to increase the knowledge of Tuberous Sclerosis (TS) throughout the world, to stimulate and coordinate research on TS, interest statutory international organizations on the welfare of TS sufferers, support TS national associations in their efforts, and to exchange information among associations. Some materials are available in Spanish, Polish, other languages and video format.

Keywords: Tuberous sclerosis, Information services, Overseas organization, Spanish language materials

   

The MCH Digital Library is one of six special collections at Geogetown University, the nation's oldest Jesuit institution of higher education. It is supported in part by the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS) under award number U02MC31613, MCH Advanced Education Policy with an award of $700,000/year. The library is also supported through foundation and univerity funding. 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.