Ehlers-Danlos Support UK

Ehlers-Danlos Support UK The Ehlers-Danlos Support UK (EDS UK), a charity raising awareness of Ehlers-Danlos syndromes & HSD. You can also text SHOUT to 85258 for 24/7 support.

Our free telephone and email adviceline is available to everyone, including people with Ehlers-Danlos syndromes (EDS) or hypermobility spectrum disorders (HSD), their families, friends, carers and healthcare professionals. The advice we can give is specific to EDS or HSD and we can help with questions on areas such as:

Getting a diagnosis
Advice on managing symptoms
Understanding what EDS is
Refe

rral procedures for EDS specialists
Access to ‘friendly specialists’
Information on accessing benefit

Before contacting our adviceline, we would encourage you to check our FAQ’s page as this may help you find the information you need quicker: https://www.ehlers-danlos.org/what-is-eds/frequently-asked-questions-about-eds-and-hsd/

The adviceline (0800 907 8518) is open 09:00 – 15:00 on Tuesdays and Fridays. Please leave a message outside these hours or email [email protected] and we will aim to get back to you within 5 working days. Our main office number (020 8736 5604) should only be used for all other enquiries. We are only able to provide advice so if you need an immediate response or are at risk of harm please contact 999, your GP or the Samaritans on 116 123 available 24/7. The helpline is completely dependent on donations. Please consider donating to help as many people as possible. EDS UK Facebook Rules -

Group posting rules are:

Don't post criticisms of staff or trustees, these should be addressed through the Chair of Trustees via the office. Full details can be found at ehlers-danlos.org

Don't use any offensive language. Don’t attack others online or say anything that could be considered insulting or provocative. Don’t intentionally say anything to hurt some else’s feelings or invade their privacy online or offline. You must respect that one persons experience is often different to that of another. You therefore are not permitted to question the integrity of somebody’s experience. You must only post about experiences which are that of your own not that you have been told about. You are not permitted to make remarks about medical professionals or facilities which could be treated as slanderous or malicious. Do not post any advertising or endorsements. Contact the group administrator through private message if you have complaints or suggestions, or if you wish to make a contribution to EDS UK.

13/06/2026

What do you find the most frustrating thing about having an Ehlers-Danlos syndrome or hypermobility spectrum disorder?

12/06/2026

What's one thing that has helped you with your EDS or HSD?

11/06/2026

Ori is a volunteer Area Coordinator for our Borehamwood support group, and is reminding you this Men's Health Week that you can access support for EDS and HSD with EDS UK.

Find your local support group (we have regional Facebook groups too): https://www.ehlers-danlos.org/support/support-groups/

Contact our Adviceline by email or phone: https://www.ehlers-danlos.org/support/helpline/

Find FAQs here: https://www.ehlers-danlos.org/what-is-eds/frequently-asked-questions-about-eds-and-hsd/

Join our Men's support group: https://www.ehlers-danlos.org/support_groups/mensgroup/

11/06/2026

Living with an Ehlers-Danlos syndrome (EDS) or hypermobility spectrum disorder (HSD) can be isolating, exhausting, and o...
10/06/2026

Living with an Ehlers-Danlos syndrome (EDS) or hypermobility spectrum disorder (HSD) can be isolating, exhausting, and overwhelming. Every day, people contact us looking for support, reliable information, and reassurance that they are not alone.

From 22nd–29th June, thanks to Postcode Society Trust, donations made to us in the Small Charity Week campaign will be DOUBLED! One donation. Twice the impact.

Together, we can make a real difference: https://www.ehlers-danlos.org/news/help-us-double-our-impact-this-june/

Artist Lucia Lovatt runs a small monthly Print Club where people receive a happy and joyful animal art print through the...
09/06/2026

Artist Lucia Lovatt runs a small monthly Print Club where people receive a happy and joyful animal art print through the post. Over time she has found that a lot of her audience are living with long-term health conditions or are caring for someone who is. Lucia says "The prints seem to bring small smiles on days that aren’t always easy."

Lucia has created a dedicated EDS UK sign up link for her monthly print club and will be making a donation to EDS UK at the end of June.

Click here to sign up and to see more of Lucia's beautiful artwork: https://www.paintingsbylucia.co.uk/print-club-eds-uk

08/06/2026

This week is Men's Health Week. David shares what has made the biggest difference for him in managing his symptoms.

What has made the biggest impact for you?

We’re very proud of our supporter Darcy Britton who held a bake sale and raised an incredible £2,905 for EDS UK! “I can’...
05/06/2026

We’re very proud of our supporter Darcy Britton who held a bake sale and raised an incredible £2,905 for EDS UK!

“I can’t express how much fun I had preparing everything and educating people along the way. It was incredible to see the amount of people that came, the willingness of people keen to learn about EDS and I also got to meet a few people from the local area who have EDS too. I’m so overwhelmed with joy and gratitude with how generous people have been.”

Address

The Ehlers-Danlos Support UK International House 66 Lavender Hill
London
SW115RQ

Opening Hours

Monday 9:30am - 5:30pm
Tuesday 9:30am - 5:30pm
Wednesday 9:30am - 5:30pm
Thursday 9:30am - 5:30pm
Friday 9:30am - 5:30pm

Website

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