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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 3 (3 total).

Children's Tumor Foundation (CTF )

Annotation: The Children's Tumor Foundation (CTF), formerly the National Neurofibromatosis Foundation, supports research on the causes, prevention, and treatment of neurofibromatosis. The foundation provides information on the disorder to patients and their families and helps them to find medical, social, and genetic counseling. It also provides information to health professionals and the public. Publications include Neurofibromatosis: A Handbook for Parents, Neurofibromatosis: Information for Kids, Neurofibromatosis: Information for Patients and Families, and a quarterly newsletter, neuro•fibroma•tosis news. Audiovisual materials include: The Many Faces of NF, video and also audiocassette of Information for patients and families. CTF also supports a Kids' Council for children to connect with other children with neurofibromatosis and to participate in running programs and fundraising activities. Materials are available in Spanish, French, Asian, and other select languages. The foundation also sponsors conferences.

Keywords: Neurofibromatosis, Information services, Medical research, Nervous system diseases

Howard Hughes Medical Institute (HHMI)

Neurofibromatosis, Inc. (NF, Inc.)

Annotation: Neurofibromatosis, Inc. provides coordinated educational, clinical, support, and research programs for people and families affected by neurofibromatosis. The organization distributes print materials, conducts symposia and an NF camp for children, and provides peer counseling and a speakers' bureau. Some materials are available in Spanish. The organization also publishes a semiannual newsletter, Neurofibromatosis Ink.

Keywords: Neurofibromatosis, Health education, Information dissemination, Nervous system diseases, Peer counseling, Support groups

   

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.