News and events

28 July, 2020

The first ever virtual edition of Prudential RideLondon

The first ever virtual edition of Prudential RideLondon – the world’s greatest festival of cycling – will take place on 15 and 16 August (the event weekend) to celebrate cycling and raise funds to help save the UK’s charities. The Ehlers-Danlos Support UK, like many other charities, has been hugely impacted by the Covid-19 pandemic […]

1 June, 2020

Volunteer week 2020

Volunteers week is an annual celebration of the contribution that millions of people make across the UK through volunteering.  Here at EDS UK we want to celebrate and thank our volunteer Area Coordinators and our Trustees who give their time to make a difference. Our volunteers give over 1000 hours over the year to support […]

18 May, 2020

My Journey to Diagnosis and Beyond

by Lyndsay McIntyre My HSD first became apparent when I was three. Well apparent to me anyway. At birth, doctors were concerned about my hips, then quickly dismissed this. By age three, I discovered that my thumbs bent back and that some of my other fingers could ‘lock’ (swan neck deformity). There was always talk […]

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 […]

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