Don’t forget to . . .
‘Join the dots’ will soon start to become visible across multiple communications as we focus efforts on avoiding life-changing health conditions by getting the earliest possible pathways to referral and diagnosis of Stickler Syndrome.
Smart clinicians and practitioners in hospitals and clinics throughout the UK and EIRE are now successfully using the NHS England-funded referrals to the world-renowned Highly Specialised Stickler Service at Addenbrooke’s Cambridge University Hospital – a truly great success story for our National Health Service.
Despite this, too many children and adults are still presenting at the specialised Stickler Clinic with devastating loss of vision in one or both eyes and undiagnosed hearing, oro-facial, and musculoskeletal symptoms which need treatment and ongoing support.
By ‘Joining the dots’ between Stickler Syndrome’s variable symptoms we can change this for so many more people.
If you connect with us through social media channels and subscribe to the monthly ‘Briefs’ newsletter you’ll be kept up-to-date with the ‘Join the dots’ progress.
You’ll start to see changes across all channels and on this website, so please bear with us while things are co-ordinated and while we evaluate from our ‘pilot’ clinics through the remainder of 2025.
If you feel you’d like to get involved in your area just get in touch with us at:
The Working Group was made up of four people: Elaine, Ian, Keith, and Steve, with professional guidance and support from Sarah from the Council for Voluntary Service Northwest Kent (who has now also joined us as a third new Trustee). All have been vital in their support and we now have new volunteers coming onboard as we progress.
Elaine, Sarah and Ian are the new trustees of the charity and will be helping to facilitate a restructure as we move forward through 2025.
The first year under the new trustees has seen a significant step forward in income and engagement which the charity hopes to sustain and improve over the coming years.
As well as the September 2024 Conference, the charity has moved ahead with projects involving Children and Young People in Education, Factsheets, Addenbrooke's Clinic 14 environment, steps towards making hospital visits better experiences for children, collaboration and information sharing with other groups, an exciting Events programme across the whole of the UK, and various fundraising support initiatives which have helped to boost the annual income by approximately 400%.
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