News and events

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 […]

21 November, 2017

2017 Management and wellbeing conference videos

Please click on the links in the Agenda below to view a presentation: DAY 1: 10.00 Welcome – EDS UK and HMSA 10.05 Overview of new classification of EDS –Dr Hanna KazKaz 10.45 Break 11.15 Managing PoTS – Dr Lesley Kavi, PoTS UK 11.40 Living with mast cell activation disorder – Gawain Paling, Mast Cell […]

22 September, 2017

NICE guidelines for chronic fatigue syndrome/ME to be updated

Some types of EDS are often misdiagnosed as chronic fatigue syndrome/myalgic encephalomyelitis (ME). EDS UK recently submitted comments on the NICE guidelines for chronic fatigue syndrome/ME as NICE had decided there was no new evidence to warrant an update (the guidelines were written in 2007). As a result of the new information from EDS UK and […]

31 August, 2017

Fundraiser of the Month -October 2017 – Kate Owen

  Myself, my partner Craig and my beloved Dog ‘Sam Dog’ are running the Glasgow half Marathon on the 1st of October to raise awareness & money Ehlers-Donlas Support UK. A very good friend of mine Friday Smith suffers with EDS, here is her story………. As a child I was always unusually bendy. I started having mild back pains […]

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