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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).

Costello Syndrome Family Network (CSFN)

Annotation: The Costello Syndrome Family Network's main focus is parent-to-parent support. The network also helps qualified researchers learn about Costello syndrome by sharing research opportunities for parents to consent to include their children's information. Through a listserve, bi-annual conferences and the published peer-reviewed articles based on information shared by parents, network families can better understand their children's syndrome and refine the "best practice" toolkit to care for and raise them. The network offers referrals, inquiry responses, and reference information. The network operates in the United States and internationally. The Web site is available in French, German, Italian, Portuguese, and Spanish, in addition to English.

Keywords: Congenital abnormalities, Non-English language materials, Spanish language materials, Support groups, Syndromes

Foundation for Ichthyosis and Related Skin Types (FIRST)

Annotation: The Foundation for Ichthyosis and Related Skin Types (FIRST) is a national non-profit organization dedicated to helping individuals and familes affected by ichthyosis. Ichthyosis is a rare genetic skin disease characterized by very dry, cracked, scaling, and thickened skin. The Foundation provides support, information, education, and advocacy for its members. The Foundation supports research into causes, treatment, and cures for ichthyosis. Informational brochures and booklets are available in English and Spanish. The Foundation also publishes a newsletter and sponsors conferences.

Keywords: Ichthyosis, Chanarin-Dorfman Syndrome, Chondrodysplasia Punctata Syndromes, Colloidion baby, Darier disease, Epidermal Nevus syndrome, Epidermolytic Hyperkeratosis, Erythrokeratodermas, Keratitis-Ichthyosis-Deafness (KID) syndrome, Multiple Sulfatase Deficiency, Palmoplantar Keratoderma syndromes, Peeling skin syndrome, Pityriasis Rubra Pilaris, Refsum disease, Rud syndrome, Skin diseases, Tay Sachs disease

   

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.