News update...

MORE RESEARCH DATA REQUIRED FOR DEVELOPMENT OF EARLY SCREENING TOOL...

‍We continue to seek families with a child between 4 and 10 years of age with Type 1 Stickler Syndrome?

If the child doesn'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 this important research to help get earlier pathways to diagnosis.

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. But sufficient data is always a critical part of any research so we need more people to come forward and help with this initiative.

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. It's that simple and straightforward and all fully GDPR compliant.

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

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RESULTS OF THE RECENT SURVEY...

A massive "Thank you" to everyone who took part in the recent Stickler Syndrome UK survey on prioritising the charity's objectives. There was a great response and lots a really positive suggestions and feedback to digest.

The full details of the survey results appeared in the July 2025 edition of the charity's 'Briefs' e-Newsletter, so if you haven't already subscribed to 'Briefs' (on this page) keep a close watch on future editions and the social media channels as we start to turn those results into actions.

WHAT WERE THE TOP THREE SELECTED PRIORITIES?...

1. Raising awareness among the medical professionals and allied healthcare professionals across the UK to aid earliest diagnosis

2. Assisting with continued research across all symptoms

3. Wellbeing and mental health support for all ages ‍‍

MORE RESEARCH DATA REQUIRED FOR DEVELOPMENT OF EARLY SCREENING TOOL...

‍We continue to seek families with a child between 4 and 10 years of age with Type 1 Stickler Syndrome?

If the child doesn'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 this important research to help get earlier pathways to diagnosis.

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. But sufficient data is always a critical part of any research so we need more people to come forward and help with this initiative.

‍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. It's that simple and straightforward and all fully GDPR compliant.

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

==

‍RESULTS OF THE RECENT SURVEY...

‍A massive "Thank you" to everyone who took part in the recent Stickler Syndrome UK survey on prioritising the charity's objectives. There was a great response and lots a really positive suggestions and feedback to digest.

The full details of the survey results appeared in the July 2025 edition of the charity's 'Briefs' e-Newsletter, so if you haven't already subscribed to 'Briefs' (on this page) keep a close watch on future editions and the social media channels as we start to turn those results into actions.

WHAT WERE THE TOP THREE SELECTED PRIORITIES?...

1. Raising awareness among the medical professionals and allied healthcare professionals across the UK to aid earliest diagnosis

2. Assisting with continued research across all symptoms

3. Wellbeing and mental health support for all ages

Of course this doesn't mean the charity won't be working on anything else, it just means that we'll be working hard to keep a focus on the ones that could make the biggest difference to us all.