Toni madigan - her eds story

Toni Madigan tells how EDS devastated her life and how a call during her lowest to the EDS UK helpline helped turn it around.

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Toni madigan - her eds story

Toni Madigan tells how EDS devastated her life and how a call during her lowest to the EDS UK helpline helped turn it around.

read more

take on a challenge

Get Fitter, be Faster and go Further. Your fundraising could be life-changing.

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12 - 24 a film about EDS

The “12 to 24” film is a key part of the fundraising campaign to aid research into the value and impact of diet to relieve the symptoms.

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It is estimated that over 13,000 people in the UK have the Ehlers-Danlos syndromes.
We offer free support with 80% of funding coming from generous donors.
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On average people wait 12 years from experiencing symptoms to receiving a diagnosis.
Misdiagnosis of EDS patients devastates lives and puts unnecessary costs on the NHS. EDS UK educates healthcare professionals in diagnosis and management.
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There are 15 types of EDS, all can be life-limiting without proper management and treatment.
With a prompt diagnosis and proper management, EDS does not have to be life-limiting. EDS UK provides information to patients, direct from the UK’s leading EDS specialists.
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The Ehlers-Danlos syndromes often lead to people becoming isolated and mental health issues.
EDS UK provides the UK’s only  freephone helpline, dedicated to helping people through their diagnosis and management of the condition.
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Help make our invisible VISIBLE FOR THOUSANDS OF PEOPLE THROUGHOUT THE UK.

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£25 could help somebody get the information they need to manage their condition.
£30 could help somebody get the information they need to manage their condition.
£50 could help somebody get the information they need to manage their condition.

*Regular donations by Direct Debit can help us to cut administration costs and enable us to plan for the long term.

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£5 a month could help us fund new ways of diagnosing the Ehlers-Danlos syndromes.
£10 a month could help us fund new ways of diagnosing the Ehlers-Danlos syndromes.
£20 a month could help us fund new ways of diagnosing the Ehlers-Danlos syndromes.

*Regular donations by Direct Debit can help us to cut administration costs and enable us to plan for the long term.

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A gift in YOUR WILL HAS THE POWER TO TOUCH MANY LIVES

Gifts in Wills power over half of our research

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featured news and stories

Aug 31, 2018

Fundraiser of the month – August – Stephen Lister & Josh Waddell

Stephen Lister and close friend Josh Waddell took on the incredible challenge of the Edinburgh Marathon in May as Stephen's sister Abigail has EDS. Together they raised an incredible £10,484.53.

Aug 22, 2018

Meet our new Medical Advisory Panel members

EDS UK welcomes two new members to its Medical Advisory Panel. Lisa Jamieson, pharmacist and nutritionist and Dr Kate Barnes, GP, bring welcome additional knowledge, skills and experience to the panel.

Jun 30, 2018

Fundraiser of the month – June 2018 -Justin Searle

One of our amazing Area Coordinators Rhona’s husband, Justin Searle, took on the challenge of rowing a marathon on a Concept2 rower on 22nd June 2018, raising a fantastic £1010!

May 29, 2018

First EDS toolkit launched for GPs

The Royal College of General Practitioners (RCGP) has launched an Ehlers Danlos syndromes (EDS) toolkit for GPs and healthcare professionals. The toolkit, created in partnership with EDS UK and funded by the charity, aims to improve the recognition, response to and management of EDS in primary care.

Apr 3, 2018

Listen to our BBC Radio 4 appeal

The charity appeal on BBC Radio 4 this Sunday will be for EDS UK.  We are so pleased that the Ehlers-Danlos syndromes and the challenges of being diagnosed will get such great exposure. The appeal will be broadcast on Sunday 22nd April at 7.55am then again at 9.25pm the same day and at 3.25pm on Thursday 26th April. 

Feb 14, 2018

Fundraiser of the Month – January 2018

Victoria Raised an incredible £525 taking part in her walking event

Jan 23, 2018

Managing EDS and muscle conditioning webinar

EDS UK was proud to host another interactive webinar with Dr. Jane Simmonds on Friday 19th January.

Jan 23, 2018

Men’s Support Group Survey

EDS UK would like to know where our male members are in the UK, and if you would like to have a men’s meeting in your area. Please kindly respond to our survey online here. It should take no longer than a few minutes.

Jan 12, 2018

Understanding PoTS webinar

EDS-UK where proud to host a live Q&A webinar on understanding and living with Postural Orthostatic Tachycardia Syndrome (POTS).

Get support with the Ehlers-Danlos syndromes

Free support for people touched the the ehlers-danlos syndromes

You can join our community to access local support groups and online groups or call our freephone helpline for advice.

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information about the ehlers-danlos syndromes

If you have been diagnosed, or know someone who has, we have reliable information to help.

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