News and events

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 […]

28 September, 2019

Fundraising event for vascular EDS

Jason and Virginia Brimson are holding an evening dinner and dance 12th October Borehamwood for Annabelle’s Challenge (Vascular EDS) and need to sell more tickets! Do come forward and join them as part of the EDS family to raise much-needed funds.< They have some great auction lots including F1 Mark Webber signed memorabilia, dinner vouchers, […]

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 […]

11 July, 2019

Wheelchairs for young people with EDS

Thanks to the generous support of The Sandhu Charitable Foundation we are pleased to announce that we will be working with Variety, the Children’s Charity , to make wheelchairs available for children with EDS and related conditions through their flagship event “the PROPS”. Funding is available for powered, manual and sports wheelchairs. Variety works closely […]

31 May, 2019

Mast cell activation expert Dr Lawrence Afrin to talk in London in November

The Academy of Nutritional Medicine is hosting mast cell activation syndrome (MCAS) expert Dr Lawrence B. Afrin MD as part of its annual conference in London on Sunday 17th November 2019. The conference is open to anyone, with discounted tickets for patients. The conference, called MAST CELLS, MOULD AND THE MYRIAD OF DIVERSE FACTORS UNDERLYING CHRONIC […]

17 May, 2019

New London-based rheumatology and hypermobility clinic for adults and children

Professors Rodney Grahame and Ian Chikanza are pleased to announce the inauguration of a new clinic to be established within the Harley Street Clinic (HCA Healthcare) at 16 Devonshire Street, London, W1G 7AF. The clinic is a new concept of care offering world-class rheumatology care for adults, children and adolescents together with the full panoply […]

7 May, 2019

EDS UK and Annabelle’s Challenge fund largest vascular EDS research database

The Ehlers-Danlos Support UK is delighted to announce that we and Annabelle’s Challenge are jointly funding the creation of one of the largest vascular Ehlers-Danlos syndrome (vEDS) research databases in the world. The funding has been awarded to the EDS National Diagnostic Service at Northwick Park Hospital and is an important step towards undertaking future research […]

1 May, 2019

MAY AWARENESS CAMPAIGN 2019

TIME TO DIAGNOSIS To help raise awareness of the Ehlers-Danlos syndromes and hypermobility spectrum disorders this May, help us to highlight how long it takes to get a diagnosis. Share your #timetodiagnosis image! For many people the journey to a diagnosis of EDS or HSD, has been a long and challenging road. Poor awareness of […]

More News Articles

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