By clicking “Accept All Cookies”, you agree to the storing of cookies on your device to enhance site navigation, analyze site usage, and assist in our marketing efforts. View our Privacy Policy for more information.

What's new?

17 May, 2024

The venue for our September 2024 Conference is… Newnham College, Sidgwick Avenue, Cambridge CB3 9DF.  And what a great venue it is... great open and relaxing spaces, superb facilities, and we're working on having some excellent UK-wide content for the 2-day programme. Delegate numbers will be limited so hurry and visit the Conference page under ‘Membership’ on this website to pre-register your interest as soon as possible, and be among the first to hear about the programme and ticketing in the coming weeks.

‍Thinking about coming on your own?... It will be a super-friendly, relaxed environment with a great mix of people from the wider Stickler Syndrome community (UK and beyond).

The 2025 London Marathon
already looks like breaking record numbers for applicants. Sunday, 27 April is the big day, so there's almost a whole year to get in shape. The charity has limited places to fill, and CRunCH will again be managing our places. We'd love to know your Stickler Syndrome story and why you'd like to take part in this amazing event, so drop us an email at as we start the selection process with CRunCH for 2025.

Our 'Children and Young People in Education' documents are now available on the About > Downloads page. A big "Thank You" to everyone involved... let's see how this is received by education settings and families. And don't forget to give us your feedback because this is how we can improve things in future revised versions. You'll find a 5-page document, a 1-page 'Key Facts' poster, and a guide on how these can be shared with teaching professionals across different settings.

Charity newsletter sign-up…
there's a sign-up for the upcoming charity newsletter on the About page. Just pop in your name and email address and we’ll add you to the mailing list, so you can keep up-to-date with what’s going on and have access to some great new content. Sign up now to be on the list for our first ever e-Newsletter... launch is planned for the end of this month!