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Stickler Syndrome UK

Stickler Syndrome UK (SSUK) works to raise awareness of Stickler syndrome amongst medical professionals and the general public, emphasising the value of early diagnosis for adults and children with the condition.

Website
https://www.stickler.org.uk/
Email address
contact@stickler.org.uk

The organisation also organises conferences, family days and other events for affected families and for professionals who want to be informed about the condition. In turn, it encourages individuals and families affected by Stickler syndrome to become members of the SSUK so that they can be updated on medical research and receive copies of all new SSUK publications.

Being part of this community helps to alleviate feelings of isolation and distress in affected individuals and families throughout the UK, especially when they are undergoing medical procedures related to Stickler syndrome.