Providing information and support for people with Stickler Syndrome throughout the UK and Republic of Ireland.

Head office based in Kent
Joined October 2023
Come and meet Trickles at ‘Santa in the City’ in London on Wednesday, 3 December. Whether you register to take part or just say “Hello, Ho, Ho” it would be great to see you as we take on the 4k fun ‘sort of run’ to help raise awareness of Stickler Syndrome.
1
1
1
69
You’ll find the full details and registration at stickler.org.uk/events. Once registered link to the group fundraiser page at justgiving.com/campaign/stic… and we’ll add you to the participants, then help us get to the fundraising target by signposting people to the page.
1
1
14
Can you help with current research into earlier-age diagnosis of Stickler Syndrome? Does this criteria apply to one child in your family? • Is aged between 4 and 10 • Has a diagnosis of Type 1 Stickler Syndrome • Does not have another connective tissue or genetic diagnosis…
1
29
This survey has undergone checks with Data Protection and all information will be strictly confidential. However, if you prefer to take the survey over the phone or via a video call you are welcome to request this so that it can be arranged directly with Dr Robert Smyth.
1
13
Can you spare a few minutes of your time to help us? We have a survey about the priorities of the charity moving forward. Whilst we appreciate that all of the topics in the survey are important to people with Stickler Syndrome, we would like to know which ones matter the most.
1
1
19
Follow the link here to complete the survey: s.surveyplanet.com/07qcmejk Thank you for giving your time! #sticklersyndromeuk #survey #youropinionmatters
11
Great fun was had at the Inflatable 5K in Brands Hatch today. Well done to all who took part. #sticklersyndromeawareness #inflatable5k
21
Today is National Siblings Day! Let’s take some time to remember how much our siblings care for and support us within the Stickler community. We really do appreciate everything they do and today’s the day to recognise that.
1
32
We mustn’t forget that sometimes they need some support too and SibsUk is great at ensuring they are not overlooked. #ItsaSiblingThing #NationalSiblingsDay2025
12
Stickler Syndrome UK retweeted
Ever wondered how a braille watch works? ⌚️ 📺 Brand new #TheRepairShop, 8pm on BBC One and iPlayer.
9
8
137
6,974
Thank you to everyone who has signed up to ‘Give as you live’ in order to make these free donations to the charity possible. #sticklersyndromeuk #giveasyoulive #freedonations
16
Wow…Sandro has caught the running bug! Today, he completed the DeeJay 10k in Torino raising yet more funds for Stickler Syndrome UK. Well done and thank you! #sticklersyndromeawareness #fundraising #running #sticklersyndromeuk
37
‘Meet our Marathoners’ Monday: Welcome to the first of our weekly introductions to the wonderful runners representing Stickler Syndrome UK in this year’s London Marathon. Read into their stories and get to know who you can cheer on from home.
1
28
In the picture below, Alice, wearing a bright pink running top and black trousers, is ringing the ‘Bell of Glory’ after achieving a Personal Best in a 20-mile run yesterday (Sunday 16th March) - only a day after hosting a fundraising event fetching in over £3200!
1
15