The Stickler Syndrome Support Group is a registered charity which offers information and support to individuals with Stickler Syndrome and to medical professionals wishing to learn more about the condition. The aim of the SSSG is to raise awareness of this common but little recognised genetic disorder and to highlight the need for early diagnosis in order to help preserve vision. Regular monitoring by an ophthalmologist with a knowledge of the disorder is vital. The SSSG produces a quarterly Newsletter which gives members the opportunity to find out how affected individuals and families cope with the condition, to share experiences and to keep up to date with advances in the medical world.
Membership is by subscription, renewable each year.
The Group also produces publications on different aspects of the condition, organises a bi-annual conference for families and professionals, and is currently developing a comprehensive database of statistical information about Stickler syndrome compiled from a confidential questionnaire sent to all members. A report on the findings will be available from Spring 1999.