Support 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 50 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 for a Big Lottery Fund grant through the National Lottery which helps pay for the meetings, training of our volunteers and much more.

Mens Online Group

Simon and Scott

Contact group

We have two Volunteer Mens Coordinators spread across different parts of the country – Lee, Simon and Scott.

I am Simon and my story with classical-like Ehlers-Danlos syndrome  started from birth. I have always struggled with bowel problems, and I could not walk far or even sit down without my knee caps popping out of place. At the time my doctors and physiotherapist did not know what was wrong with me. I  spent time in Great Ormond Street Hospital having tests done to see what the problem was and I was diagnosed in my early teens. For me, this was great because it meant I could work on the problems and try and fix them. At school, I knew I wanted to become a pilot but was told because I have learning difficulties and EDS, that this would be impossible. When I left school I swam a lot to get my aviation medical along with my pilot’s license. I want people to believe that they can still achieve their dreams. I would really like to help teenagers with EDS and show them my story and that there is a life with EDS if you can find management. Email: edsukdevon@gmail.com

Hi I’m Scott, I was diagnosed with Hypermobile EDS in 2016. I am pleased to take on the role of joint Men’s Coordinator in the hopes of increasing awareness of EDS and sharing information. I have a working background of Multimedia Technology & Photography and doing multiple volunteer projects for various charities. Email: mensedsukscott@gmail.com

Members of EDS UK are welcome to join our men’s closed members group on Facebook. Visit us here to join.

‘I’m fine’ is the name of the mens online support group which meets across the year on the Zoom platform as well as through the ‘Men only’ Facebook 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.

online eds uk support group meetings

Online meeting

Date: January 4, 2022

Start: 7:30 pm

Finish: 9:00 pm

Zoom meeting link: Click here to join

Additional info: Please ensure you read our online support group meeting policy and privacy policy before attending. The online support group policy is particularly important as it sets out guidelines for how the meeting will take place and things you should consider before attending an online support group.

Men's 'I'm Fine' Support Group Meeting with Simon and Scott

online eds uk support group meetings

Online meeting

Date: December 7, 2021

Start: 7:30 pm

Finish: 9:00 pm

Zoom meeting link: Click here to join

Additional info: Please ensure you read our online support group meeting policy and privacy policy before attending. The online support group policy is particularly important as it sets out guidelines for how the meeting will take place and things you should consider before attending an online support group.

Men's Support Group Meeting - the 'I'm fine' group will be led by our EDS UK Men's Coordinators

More Support

Support groups, advice with work, help with benefits and more

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