From 1989…

Stickler Syndrome UK was founded in 1989 by Wendy Hughes (who sadly passed away in January 2019).

In 1994 Dr Gunner B. Stickler [13 June 1925 – 4 November 2010], who defined the condition in 1965, came over from America for one of the early well-attended conferences and accepted the group’s invitation to become our Life President.

Three years later (1997) Stickler Syndrome UK was granted charitable status and Wendy was officially recognised as our Honorary President.
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Considerable effort was carried out over the years to raise awareness among the general public and medical profession, with representation at medical events, publication of literature, and general support and information spreading to the charity’s membership.

As a community, we are grateful for the time and effort put in, by a number of keen volunteers, on behalf of everyone whose day-to-day lives are affected by Stickler Syndrome.