Stickler syndrome in the news

Our Radio & TV media campaign (w/c 13 April 2026)

Planning started in 2025 with the Highly Specialised Sticker Service based at Addenbrookes in Cambridge and carried on through the early months of this year.

As part of the initiative to try and build awareness across medical professionals and the general public we needed to call on some amazing people and families to participate in pre-recorded and live interviews with carefully planned media. Then it was down to which of these case studies appealed to different Radio and TV producers at that time.

As well as personal stories, inclusion of their children on school days, and trying to get the mentions in for 'Joining the dots', the new Screening Tool on the website, Stickler Syndrome UK charity, the Highly Specialised Stickler Service in Cambridge, and the NHS funding - our interviewees were all absolutely brilliant.

As we move forward through 2026 we will start to use some of these media clips in targeted information campaigns and begin to share them with other collaborators in the field of 'rare conditions'. So it wasn't just for last week, it's for the next 2-3 years!

The very fact that our NHS has free funding at the point of care for testing, diagnosis and treatment of Stickler syndrome is a major success story in itself. And although this is funded by what is currently 'NHS England' it is quite possible to just send referral letters from Wales, Scotland, Northern Ireland and EIRE to the Cambridge team where they will process these with commissioning arrangements for each respective health authority.

Awareness is our biggest mission of 2026, while so much more needs to be worked on when the charity has the funds to do so. What has become clearer than ever before is that the most ground we can make is by working together as a community, sharing our experiences and stories, spreading the word and promoting positivity in our individual challenges.

Each person involved in the recent media campaign deserves a massive "Thank you" for their contribution to what has been, and will continue to be, a drive for much better awareness and faster pathways to diagnosis, treatment and support for people and families with Stickler syndrome and associated conditions.