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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 1 (1 total).

Freeman-Sheldon Parent Support Group (FSPSG)

Annotation: The Freeman-Sheldon Parent Support Group (FSPSG), now part of the Freeman-Sheldon Rsearch Group, provides emotional support to families affected by Freeman-Sheldon syndrome, also known as whistling face syndrome and cranio-carpal-tarsal dysplasia. Families share their experiences in coping with the syndrome, information about treatments, and pertinent medical literature. The group also supports national and international research on the syndrome.

Keywords: Chronic illnesses and disabilities, Coping, Cranio-carpal-tarsal dysplasia, Facial abnormality, Family support, Information services, Medical research, Musculoskeletal diseases, Parent groups, Support groups, Whistling face syndrome