Freeman-Sheldon Parent Support Group - FSPSG
Organization URL(s)
fspsg@mail.burgoyne.comwww.fspsg.org/
Other Contact Information
509 East Northmont Way
Salt Lake City,
UT 84103-3324
801-364-7060 (Voice)
Description
The Freeman-Sheldon Parent Support Group is a nonprofit organization that provides information and emotional support to individuals and parents of children with Freeman-Sheldon Syndrome. This syndrome has also been called Whistling Face Syndrome and Cranio-Carpo-Tarsal Dysplasia. The organization's members share personal experiences in raising children with this condition and provide helpful hints on making daily routines easier to handle. The organization also provides up-to-date information on treatment. The organization maintains a file of the medical literature on the syndrome. Members of the group can elect to participate in research projects for this syndrome.
Online Resources
- Freeman-Sheldon Syndrome
http://www.fspsg.org/index.htm
Print Resources
FSPSG Newsletter; Bibliography of the medical literature for Freeman-Sheldon Syndrome.