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.

Privacy Preference Center

When you visit websites, they may store or retrieve data in your browser. This storage is often necessary for the basic functionality of the website. The storage may be used for marketing, analytics, and personalization of the site, such as storing your preferences. Privacy is important to us, so you have the option of disabling certain types of storage that may not be necessary for the basic functioning of the website. Blocking categories may impact your experience on the website.

Reject all cookies Allow all cookies

Manage Consent Preferences by Category

Essential

Always Active

These items are required to enable basic website functionality.

Marketing

Essential

These items are used to deliver advertising that is more relevant to you and your interests. They may also be used to limit the number of times you see an advertisement and measure the effectiveness of advertising campaigns. Advertising networks usually place them with the website operator’s permission.

Personalization

Essential

These items allow the website to remember choices you make (such as your user name, language, or the region you are in) and provide enhanced, more personal features. For example, a website may provide you with local weather reports or traffic news by storing data about your current location.

Analytics

Essential

These items help the website operator understand how its website performs, how visitors interact with the site, and whether there may be technical issues. This storage type usually doesn’t collect information that identifies a visitor.

Confirm my preferences and close

News update...

25 June, 2025

Stickler Syndrome London Marathon Runners 2025

JUST ONE WEEK REMAINING TO ADD YOUR VOICE TO OUR SURVEY... it takes just a few minutes to add your opinion anonymously in our charity's 2025 community survey.

The results of this survey will guide the areas that we try to concentrate most of our efforts on for the coming 12-18 months.

Take that 5 minutes now and be part of the charity's direction by providing your input HERE.
‍
==
‍
CONNECT TO OUR YOU TUBE CHANNEL... to view Rohan Mudkavi's musculoskeletal presentation from the 2024 Conference. This covers research on responders to pain management clinic appointments. It also concludes that we really need the involvement of the Stickler Syndrome community in order to get the numbers for further research (this applies across different clinical features and symptoms that could be part of new or further research).

==

WERE YOU SUCCESSFUL in the 2026 London Marathon Ballot? With record applicants and the inevitable disappointments there's still just enough time to apply through CRunCH to be part of the Stickler Syndrome UK marathon runners team. Good luck to all our applicants.

==

PLEASE FOLLOW AND SUBSCRIBE... We really need your numbers following social media channels and subscribing to our YouTube channel and 'Briefs' email-Newsletter. Funding and sponsorship for support and research projects is largely dependent on the number of connections that the charity has. Without this help it will be much more difficult to realise the objectives and goals from our objectives survey.

HELP US TO HELP YOU... the links are in the header of this page and the Newsletter form is on this page. Thank you.‍‍

I want to know more about the charity

I want to know more about Stickler Syndrome

I have an emergency

News update...

Sign up for our email newsletter