Search Results: MCH Organizations

Annotation: Founded in 1938, the American Academy of Dermatology (AAD) is a professional society of medical doctors specializing in skin disease. The organization conducts educational programs, provides placement , and compiles statistics. Publications include a directory, a newsletter, and the Journal of the American Academy of Dermatology. Some materials are available in Spanish. ADD also maintains a listserv.

Keywords: Skin diseases

Annotation: The Dystrophic Epidermolysis Bullosa Research Association of America (DEBRA) promotes and supports basic and clinical research on epidermolysis bullosa (EB) and provides information on EB to patients, families, health professionals, and the public. The association distributes educational materials on EB and provides referrals for medical care, social services, and genetic counseling. The organization also sponsors conferences.

Keywords: Epidermolysis bullosa, Medical research, Information dissemination, Spanish language materials, Skin diseases

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

Annotation: The National Alopecia Areata Foundation (NAAF) serves as an international center for information on alopecia areata. The foundation provides services for people with alopecia areata, educates state and federal officials on the need for fairer insurance laws and more government-sponsored research, conducts public awareness programs, sponsors an annual international conference, offers a support group, and raises funds for research on the causes, treatment, and cure of alopecia areata. Publications include informational brochures and a bimonthly newsletter. Materials are available in Spanish, German, Greek, Chinese, Portuguese and French.

Keywords: Alopecia areata, Skin diseases

Annotation: The NIAMS Information Clearinghouse is a public service sponsored by the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) that provides health information and information sources. NIAMS, a part of the National Institutes of Health (NIH), leads the Federal biomedical research efforts in arthritis and musculoskeletal and skin diseases. The Clearinghouse distributes NIAMS publications. Some materials are available in Spanish. Additional information and research updates can be found on the NIAMS web site.

Keywords: Arthritis, Alopecia, Arthroscopy, Ichthyosis, Information dissemination, Lyme disease, Musculoskeletal diseases, Self help clearinghouses, Skin diseases, Women', s health

Annotation: The National Foundation for Ectodermal Dysplasias (NFED) empowers and connects people touched by ectodermal dysplasias through education, support, and research. NFED provides information to families, caregivers, researchers, teachers, coaches, and others. The foundation partners with universities and private practices across the United States to increase access to quality and affordable health care for individuals affected by ectodermal dysplasias including oral health care. NFED publishes a quarterly newsletter, a medical guide series, children's books, and more. The website includes news and information about events, programs, an international registry, research grants, and scientific meetings.

Keywords: Dental care, Ectodermal dysplasia, Financial support, Information services, Oral health, Skin diseases

Annotation: The National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) conducts and supports research on arthritis, musculoskeletal disorders, and skin diseases, responds to inquiries from consumers and professionals, and provides information and publications. Some materials are available in Spanish. The institute also sponsors conferences.

Keywords: Arthritis, Information services, Medical research, Musculoskeletal diseases, Skin diseases, Women', s health

Annotation: The National Psoriasis Foundation (NPF) is a lay nonprofit organization with a mission to improve the quality of life of people who have psoriasis and psoriatic arthritis. Through education and advocacy, the Psoriasis Foundation promotes awareness and understanding, ensures access to treatment and supports research that will lead to effective management and, ultimately, a cure. The organization's mission is accomplished by publishing the most current information on psoriasis; providing a forum for those who have psoriasis to speak out; funding thousands of dollars for psoriasis research; and establishing an alliance between people who have psoriasis, the scientific community, the medical community, and the pharmaceutical industry. NPF also sponsors conferences and training seminars. The foundation is governed by a national lay Board of Trustees, counseled by a Medical Advisory Board of leading dermatologists, and run by a nonmedical staff.

Keywords: Psoriasis, Skin diseases

Annotation: The National Vitiligo Foundation (NVFI) is an information clearinghouse for vitiligo patients and their families. The foundation offers information on the latest advances in treatment and also funds research projects for vitiligo. Publications include a biannual newsletter, a general brochure about Vitiligo, handbook for patients, and a handbook for schools.

Keywords: Benoquin, Depigmenting, Dermatology, Skin diseases, Vitiligo