Search Results: MCH Organizations

Annotation: The Benign Essential Blepharospasm Research Foundation (BEBRF) is an international clearinghouse for information on spasms of the facial musculature (blepharospasm, Meige's syndrome, and hemifacial spasms). The foundation works to eradicate blepharospasm and to support people with the disorder. Activities include sponsorship of continuing education and an annual international conference. The foundation provides referrals, publications, and reference information to consumers. Publications include Benign Essential Blepharospasm, Meige's and Other Related Disorders , a bimonthly newsletter, and a catalog of audiovisual materials. Some materials are available in Spanish. The Foundation also sponsors conferences and workshops.

Keywords: Benign essential blepharospasm, Facial dystonia, Meige syndrome, Neuromuscular diseases, Support groups, Information services, , Vision disorders

Annotation: The Center for Jewish Genetic Diseases (formerly the National Foundation for Jewish Genetic Diseases) at The Mount Sinai Medical Center is devoted to the study of diseases that affect Ashkenazi Jews. The Center's missions are: (1) to improve the diagnosis, treatment, and counseling of patients and their families suffering from Jewish genetic diseases and (2) to conduct intensive research to combat these inherited diseases. The Center publishes scientific articles, presents papers at national meetings, sponsors international meetings, and collaborates with other researchers in the process of making discoveries and developing therapies.

Keywords: Metabolic diseases, Bloom syndrome, Canavan disease, Familial dysautonomia, Gauchers disease, Information dissemination, Mucolipidosis, Niemann Pick disease, Public awareness materials, Tay Sachs disease, Torsion dystonia

Annotation: The Dystonia Medical Research Foundation is a nonprofit organization that works to build awareness of dystonia, a neurological disorder characterized by involuntary muscle spasms that twist the body into painful and disabling postures. The foundation promotes research on the causes of dystonia and sponsors chapters and support groups for people with dystonia and their families. Services to consumers include referrals, publications and reference information. Publications include a newsletter, a quarterly magazine, and pamphlets and age-specific guide books for dystonia families. Audiovisual materials include documentaries, public service announcements on dystonia and a new children's video, I Am Not Dystonia. A catalog is available. Some materials are available in Spanish and French. The foundation sponsors conferences and training seminars.

Keywords: Dystonia, Medical research, Support groups, Information services, Neuromuscular diseases