Search Results: MCH Organizations

Annotation: The American Behcet's Disease Association provides information and peer support for people with Behcet's disease. The association offers a quarterly newsletter, information on audiotape, telephone support, local support group information, and national patient conferences. Some materials are available in Spanish.

Keywords: Behcet', Connective tissue diseases, Parent groups, Reiter', Stevens-Johnson Syndrome, s Syndrome, s Syndrome

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

Annotation: The Ehlers-Danlos National Foundation (EDNF) provides emotional support, education, and understanding for people with Ehlers-Danlos syndrome and their families. The foundation sponsors learning conferences and serves as an informational link to the medical community. Publications include a quarterly newsletter, Loose Connections. The foundation has local branches through out the United States.

Keywords: Connective tissue diseases, Ehlers Danlos syndrome, Family support services, Information services, Parent groups

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,

Annotation: The Scleroderma Foundation (SF) formerly known as United Scleroderma Foundation (USF) provides emotional and educational support for people with scleroderma and their families in the United States and Canada. The foundation supports scleroderma-related research and publishes a quarterly newsletter. A publications list is available. It also provides consumers with referrals and reference information and sponsor s conferences. Some materials are available in Spanish.

Keywords: Scleroderma, Connective tissue diseases, Health education, Support groups

Annotation: The Scleroderma Research Foundation is dedicated to finding a cure for scleroderma and, until itis found, helping patients live longer, fuller lives. If funds research, conducts an annual scientific workshop, and provides patient information and a newsletter.

Keywords: Connective tissue diseases, Scleroderma