Who to Contact
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Search Google for "Stickler Syndrome"
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.
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