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Charity Announcement

We are saddened to inform all members of the death of our founder and president Wendy Hughes.  After a long battle with liver cancer she died peacefully at home with her family on 28 January 2019. Despite deteriorating health she continued to work tirelessly to further our cause with the NHS, Addenbrookes Hospital and other organisations.

The work will now begin to decide how we can take the charity forward.

Bayer Ophthalmology Honours for Mr Snead and his Cambridge Team

Stickler Syndrome UK has great pleasure in announcing that at a ceremony held on Thursday 1 December 2016 at the Royal College of Surgeons in London, the Stickler Syndrome Service were commended in the “best team” category. The national Stickler Syndrome Diagnostic Service was a very strong entry with successful patient pathways linked to research and very strong patient support. The judges described the team as ‘very specialist’ and world class.’ It is an excellent example of multi-disciplinary working that can he applied to other areas. They were also the winners in the category of “best MDT team” working in the field of Ophthalmology. The clinic came about as a result of the research and MDT service. In 2011 the Department of Health commissioned the team to provide the now National Stickler Syndrome Diagnostic Service for all patients in England with Stickler syndrome. Health boards access the service via their own commissioning arrangements ensuring that all UK NHS patients have free access to a true MDT service unparalleled anywhere else in the world. This is a great achievement both for Addenbrooke’s and for the Stickler service and I am sure all our members will join me in congratulating the team who work tirelessly on our behalf to improve the time of diagnosis, identify and improve methods of dealing with repeated retinal detachments and continue to research all aspects of this grossly under-diagnosed progressive condition, so that those affected can understand the problems associated with this multi symptom condition and learn to live within its restrictive confines.