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News update...

8 July, 2025

Stickler Syndrome London Marathon Runners 2025

REQUEST FOR PARTICIPATION IN RESEARCH... Do you have a child between 4 and 10 years of age with Type 1 Stickler Syndrome?

If they don't have another connective tissue or genetic diagnosis, or a previous diagnosis of Perthes disease, just 5 minutes of your time could really help with important research.

The Addenbrooke's CUH research team working with Dr Robert Smyth is looking into developing a screening tool to help identify young patients with a higher risk of retinal detachment and potential blindness.

What does it involve? Just send an email to contact@stickler.org.uk and we'll send you a Participation Info sheet and a link to the online survey. The charity has no other role in this research and just wants to help find families who can provide the essential data for the team.

Here's a bit of background with Dr Robert Smyth's presentation from the 2024 Conference.

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PLEASE FOLLOW AND SUBSCRIBE...

We really need your numbers following social media channels and subscribing to our YouTube channel and 'Briefs' email-Newsletter.

Funding and sponsorship for support and research projects is largely dependent on the number of connections that the charity has. Without this help it will be much more difficult to realise our objectives.

We know we have thousands of people affected directly or indirectly by Stickler Syndrome; lets get as many as possible connected with family and friends to give us those essential follower numbers that will help us to make a difference.

The social media links are in the header of this page and you can subscribe to our monthly Newsletter from the short form on this page. Thank you.‍‍

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