Stickler Involved People (SIP)
15 Angelina Drive
Augusta, Kansas, USA 67010
The mission of Stickler Involved People is to educate and give support to people affected by Stickler Syndrome. They have a shared network and are in the process of starting a pen pal group for all ages.
Stickler Involved People publishes a quarterly newsletter, Stickler Involved People Newsletter, at no cost to members, and a brochure, "Strickler Syndrome--What You Need to Know First." They have a bibliography of articles regarding the syndrome that is available. You can contact them for a list of articles and to obtain a particular article.
Additionally, SIP collects information on physicians and researchers who treat/study the condition and makes this information available upon specific request. They will provide referrals dependent upon need.