News and events

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 […]

26 April, 2019

Dr Alan Hakim sabbatical

Consultant rheumatologist Dr Alan Hakim announced yesterday that he will be taking a 12 month sabbatical from clinical work to focus on education, training new colleagues and research. As of now he is not accepting new patient referrals but will be seeing everyone already booked to see him between now and August. Please see Dr Hakim’s […]

19 March, 2019

Webinar recording available – get the most for your child from schools and professionals

On Tuesday, March 19th at 11am, the author of Ezra’s Extraordinary Stripes, educational and child psychologist Dr. Louise Lightfoot, came to our office to broadcast a free webinar for EDS UK members on how to get the most for your child from schools and professionals.   Members can view a recording of the webinar here. […]

1 March, 2019

EDS UK sign the Rare Disease UK’s open letter to the Government

The Ehlers-Danlos Support UK signed the Rare Disease UK’s open letter calling on the Government to review and refresh the UK Strategy for Rare Diseases. The letter has been signed by over 125 patient organisations in the space of a week and all in time for Rare Disease Day! A copy of the letter has […]

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