SearchSupport Groups
Did you know...all our support groups are run by Area Coordinators who volunteer their time to organise meetings all over the country. Our Area Coordinators are from all walks of life including some who suffer with EDS, to those who care for someone with it. Without our volunteers, the support we provide to you would cease to exist, so we are incredibly grateful for the invaluable work they do.
We have over 100 groups online and face to face, with the aim to provide safe, friendly environments where members can meet others, listen to people’s stories and learn from each other. All of our support groups also have a closed regional Facebook group for members only.
We are very grateful to all of our funders who help pay for the meetings, training of our volunteers and much more.
Truro
Zandra and Riley
I wasn’t diagnosed with EDS until I was 45. As soon as I got the diagnosis, everything fitted into place but then I was put into GP care, none of whom had a clue. This was part of my decision to become an Area Coordinator, there must be others in the same position and need support.
I spend some of my time fundraising for various local organisations. The rest of my time is spent listening to music, I’m slightly obsessed with George Michael and The Slow Readers Club. I’m also an avid fan of Wigan Athletic Football Club.
I look forward to seeing others at the next webinar.
Hello I’m Riley and I use he/him pronouns. I became involved with EDS UK about a year ago now and have been attending Simon’s zoom meetings in the South West. I am now helping out Simon (Exeter) and Zandra to facilitate more meetings in the South West.
I currently have a diagnosis of hypermobility syndrome along with comorbidities that come along with that including stomach issues and many other symptoms relating to EDS.
Some of my favourite things are the London Underground, London in general and trains – I very much enjoy trains.
I am also on the autism spectrum which means I struggle a lot with daily management of these conditions and support groups have really beneficial for me by showing me that I’m not the only one having to deal with floppy joints. It has also given me an understanding of the condition and how it affects me specifically.
My role will be supporting Simon and Zandra with their groups, including facilitating groups if people are away. I also have a big interest in benefits applications and making sure people have the right things to help them with everyday life.
I’m really happy to be involved as an Area Coordinator and I hope I can help people in our community benefit from the group’s as much as I have.
Members of EDS UK are welcome to join their regional closed members group on Facebook. Visit us here to join your regional group.
Please note that Volunteer Area Coordinators may not get back to you immediately.
If you need to talk right now, whatever you’re going through, there are people you can talk to any time. You can:
call Samaritans on 116 123 (UK-wide)
text SHOUT to 85258 (UK-wide)
call C.A.L.L. on 0800 132 737 (Wales only)
These services are for anyone who’s struggling. They won’t judge you.
They’re free, they’re anonymous, and they’re always open.
Date: 26th September 2026
Start: 1:00 pm
Finish: 4:00 pm
Venue: The Conference Room, The Moresk Centre, St Clement's Street, Truro, TR1 1EQ
Additional info: Join Zandra & Riley for a Truro members in-person support group meeting. Refreshments are provided. There is no on-site parking at the Moresk Centre. The nearest places are a Cornwall Council car park opposite (called ‘Old Bridge Street car park’). Or there is an NCP car park approximately 100m up from the Centre. There is disabled access at the centre itself, but please be advised that the road and pavement leading to the entrance is quite steep. The entrance is at the side of the building.
Map: