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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).

Coalition for Heritable Disorders of Connective Tissue (CHDCT)

Annotation: The Coalition for Heritable Disorders of Connective Tissue (CHDCT) consists of 14 member organizations representing various heritable disorders of connective tissue. The goals of the CHDCT are to bring about greater awareness and understanding of heritable disorders of connective tissue in medical professions and in the public at large; to encourage teaching in the schools; to train health practitioners to help identify, diagnose, and treat various heritable connective tissue disorders; and to foster research. CHDCT sponsors workshops. Publications include fact sheets.

Keywords: Connective tissue diseases, Marfan syndrome

National Marfan Foundation (NMF)

Annotation: The National Marfan Foundation (NMF) supports research on Marfan syndrome and related connective tissue disorders, provides information for affected families and physicians, and enables people with the syndrome and their families to share experiences, support one another, and improve their medical care. The foundation sponsors an annual conference. Publications include The Marfan Syndrome (5th ed.), The Marfan Syndrome: A Booklet for Teenagers, How John Was Unique (children's picture book), Marfan Syndrome: A Teacher's Booklet, various reprints of newspaper, magazine, and medical journal articles, a quarterly newsletter, "Connective Issues", Specialty brochures including one on Physical Avtivity and another on Pediatric Concerns, and a catalog. Available audiovisual materials include "How Do Your Genes Fit?", developed especially for use in middle schools, which explains genetic disorders, especially Marfan Syndrome; "The Heart of the Matter, a general informational video; and a CME accredited video, "Emergency Diagnosis and Treatment of Aortic Dissection."

Keywords: Connective tissue diseases, Marfan syndrome, Medical research, 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.