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Stickler Syndrome Support Group

Hello and Welcome!

Stickler syndrome is a genetic progressive condition, which can affect both sexes and is normally passed on from parent to child. It affects the body's collagen that forms a major part of connective tissue. Stickler syndrome is a common but little recognised genetic disorder. One in 10,000 persons may be affected, although many medical professionals believe that the figure is considerably higher. Symptoms are variable and can present in different ways even with the same family. Stickler syndrome can seriously effect vision, hearing and joints and can be the cause of cleft palate.

The Stickler Syndrome Support Group (SSSG) in the UK was founded by Wendy Hughes in 1989. The SSSG can make a difference: By raising awareness of Stickler syndrome amongst medical professionals and the general public. By emphasising the value of early diagnosis for adults and children with the condition. By stressing in our literature, and to all professional and family contacts, that prompt treatment for retinal detachment and other eye problems associated with the condition can help to preserve vision. By producing clear and accurate information about Stickler syndrome in print and on our website. By organising conferences, workshops and other events for affected families and for professionals who want to be informed about the condition. The Stickler Syndrome Support Group (SSSG) is totally funded by charitable donations and all work is done by volunteers. Any donation given by you will help the SSSG to continue the valuable work it performs. Please give generously.



(Registered Charity Number: 1060421)


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