News and events

31 August, 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. Abigail was finally diagnosed in 2017 after years of struggling to know what was wrong. She lives with daily pain, despite have 10 surgeries. Together, Stephen and Josh raised a fantastic […]

22 August, 2018

Meet our new Medical Advisory Panel members

We are very pleased to welcome two new members to our Medical Advisory Panel. Lisa Jamieson, pharmacist and nutritionist and Dr Kate Barnes, GP, Integrated Health Practitioner and educator, bring welcome additional knowledge, skills and experience to the panel which advises EDS UK on the provision of best-practice clinical treatments for people with EDS in […]

30 June, 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. Justin said before his challenge “Rowing a marathon on an ergo (static rowing machine) is no mean feat. The furthest I have ever rowed on one so far is […]

29 May, 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. The toolkit sets out the latest thinking in EDS, including […]

3 April, 2018

Listen to our BBC Radio 4 appeal

 Our lovely supporter Toni Madigan tells her EDS story and talks about how she benefited from contacting the EDS UK helpline. Please share information about the appeal and don’t forget to listen! The  BBC Radio 4 charity appeal on Sunday 22nd April was for EDS UK.  We are so pleased that the Ehlers-Danlos syndromes and the […]

14 February, 2018

Fundraiser of the Month – January 2018

My father in law recently lost a very brave battle with cancer. He raised money for charity all throughout his life including abseiling from the forth rail bridge only months after a stroke. He was a civil engineer in Edinburgh and had a great interest in the new bridge, but unfortunately never got to see […]

23 January, 2018

Managing EDS and muscle conditioning webinar

EDS UK was proud to host another interactive webinar with Dr. Jane Simmonds on Friday 19th January. She is a physiotherapist specialising in hypermobility-related conditions, practising at both University College London Hospital and St. John and St. Elizabeth Hospital. The recording of the webinar can be viewed here. In addition Jane spent time with us […]

23 January, 2018

Men’s Support Group Survey

EDS UK is looking to run a series of men’s meeting beginning late spring around the UK. Men’s meetings are a little different to local area meetings. They are less formal, and have a more sociable feel. They are for all male members touched by EDS, including patients, fathers, husbands and male carers. Meetings are […]

12 January, 2018

Understanding PoTS webinar

EDS-UK were proud to host a live Q&A webinar on understanding and living with Postural Orthostatic Tachycardia Syndrome (POTS). The webinar featured Dr. Mark Belham, a consultant cardiologist at the Cambridge Heart clinic, Addenbrookes Hospital.

11 December, 2017

“12 – 24” – A film about EDS – Raising funds for vital research to help make lives better

Today EDS UK is launching “12-24” (supported by The Ehlers-Danlos Society). This is a short film that marks the start of a major fundraising campaign to pay for research to test whether dietary changes can reduce symptoms and improve quality of life for people with EDS. Professor Qasim Aziz at Barts and The London School […]

More News Articles

Charity news, patient stories, events, reearch & Ehlers-Danlos in the press