What's new?

Tickets are now available for our 2-day September 2024 Conference (click on the underlined link to go straight to the Conference page). Day 1 welcomes some great speakers and content with up-to-date info on a range of topics and a brand new Q&A panel to close off the day's proceedings.

On Day 2 we're now starting to confirm the involvement of third-party organisations across topics of support for people living with Stickler Syndrome. We're delighted to also welcome representatives of TRS National Resource Center for Rare Disorders who will be travelling from Norway to present their research project on the psychosocial aspects, quality of life, physical function in daily life, pain, and fatigue in adults with Stickler Syndrome.

Go straight to our website's new Events page to join us at the Run Alton Towers family fun event in November. This includes a Kids' Race (including buggies and wheelchairs) along with 5k, 10k and Half-Marathon runs over the weekend of 16 & 17 November, but everyone can join in as a spectator with free access to the theme park after each day's events.

Stickler Syndrome UK will be there along with several other organisations and charities so it's a brilliant opportunity to have fun and spread the awareness at the same time... and it's the start of a whole UK-wide inclusive events programme, so we'd love your support to get this up and running (so we'll be paying the registration fees of all event entrants up-front).

If you'd like to take part in something a little closer to home, why not look at the Regional Event Cards... if something 'takes your fancy' just drop us a line at contact@stickler.org.uk and we'll look into sorting out a registration deal for you.

The June edition of our 'Briefs' e-Newsletter… saw one of our subscribers win a surprise gift for opening up the newsletter clicking the links in the content. The 3rd edition comes out at the end of July so if you're not already subscribed, you can sign-up on the About page of this website and you might be this month's lucky winner. If you have subscribed and haven't received your newsletter by email, please check your Junk/Spam folder in case it has slipped into there.