News and events

2 April, 2020

A message to our members and supporters from our CEO

COVID-19 is hitting every person and organisation in the world hard, changing the way we live and taking away the freedoms we live by. Charities are unfortunately no different and many small, medium and large charities are having to make difficult and unprecedented decisions which will affect their staff and the very people they are […]

19 March, 2020

Postponement of 2020 vascular EDS conference

We are sorry to announce that we have taken the difficult decision to postpone the vascular EDS conference. We were so looking forward to welcoming you in May, however, following advice from the government and our medical advisors, this is the right thing to do in these uncertain times. If you have booked tickets for […]

19 March, 2020

New online support services launched

In response to the recent outbreak of COVID-19 and the increased likelihood that many of our members may become more isolated than usual, we are moving many of our face to face support groups online and proving two new support services.   1. New weekly online clubs: 2 book clubs, a puzzle club and a […]

12 March, 2020

EDS and coronavirus (COVID-19)

Updated 19 March 2020 It is understandable that people with EDS and associated health challenges are worried about their risk of contracting the new coronavirus which causes the illness COVID-19. As the virus is newly identified, there is very little known about how it affects people and there is no specific advice for people with […]

4 March, 2020

BSR statement on developing hypermobility guidelines

The British Society of Rheumatology has today issued a statement saying that it will not be developing guidelines on the diagnosis and management of hypermobility-related problems due to insufficient evidence to inform guidelines. The statement includes reference to the Ehlers-Danlos syndromes toolkit we developed in partnership with the Royal College of GPs (RCGP), released in […]

21 February, 2020

EDS UK signs up to the disability confident scheme

The Disability Confident scheme run by the Department for Works and Pensions, supports employers to break down barriers and make the most of the talents that disabled people can bring to the workplace.  Disability Confident organisations play a leading role in changing attitudes for the better, changing behaviour and cultures in their own businesses, networks and […]

5 November, 2019

New research shows hEDS and HSD 10 times more common than previously thought

New research published today suggests hypermobile EDS (hEDS) and hypermobility spectrum disorder (HSD), previously known as joint hypermobility syndrome (JHS), are 10 times more common than previously thought. Researchers from Swansea and Cardiff universities looked at combined medical records from GP practices and hospital admissions in Wales over a period of 27 years, from 1990 […]

11 October, 2019

Ehlers-Danlos Support UK mentioned in parliamentary debate

Following Healthwatch Calderdale’s report into the experiences of adults with hypermobility syndromes published in July, the MP for Calder Valley, Craig Whittaker tabled a debate in parliament on Monday 7 October highlighting the findings of the report and calling for action. Mr Whittaker stressed that hypermobile EDS (hEDS) and hypermobility spectrum disorder (HSD) are specifically […]

5 September, 2019

EDS UK responds to BSR guidance on problem hypermobility in children

We have responded today, with the HMSA, to the guidance published recently by the British Society of Rheumatology on managing symptomatic hypermobility in children and young people. Having supported families affected by Ehlers-Danlos syndromes and the newly redefined hypermobility spectrum disorders (HSD) for over thirty years, we were disappointed not to have the opportunity to […]

8 August, 2019

Healthwatch reports on experiences of people with hEDS and HSD

Healthwatch Calderdale has published a report of the experiences of people with hypermobility-related disorders across the Yorkshire and Humber region. Two hundred and fifty people took part in the survey-based study. The report’s findings support our own evidence based on our members’ experiences – that people with hypermobility-related problems are facing huge difficulties in getting […]

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