www.sticklers.org firstname.lastname@example.org Other Contact Information
Augusta, KS 67010
316-259-5194 (Voice) Description
Stickler Involved People (SIP) is a national network whose purpose is to increase awareness of Stickler syndrome by educating medical professionals, educators, and people with Stickler syndrome and their families. Because Stickler syndrome manifests itself differently in each person, it is very difficult to diagnose. The Network's education material includes information on the variety, and severity of symptoms associated with Stickler Syndrome, and a diagnostic aid for physicians, specifically neonatologists and pediatric geneticists and rheumotologists. Two videos about Stickler syndrome are available on the SIP web site. SIP responds to inquiries by mail, telephone, and electronic mail. SIP sponsors an annual conference, and maintains a listserv to promote one-on-one contacts.
Quarterly Newsletter (free with membership), journal reprints, and the book "Stickler - the Elusive Syndrome". A publication list is available.
Connective Tissue Disorders
Tuesday, Aug 21, 2012