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September 5, 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 comment on the guidance before it was published. We found the guidance to be inaccurate and unhelpful in several areas.
August 8, 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.
July 11, 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. Applications for funding can be made by a professional, parents or the young person themselves but must be supported in writing by an appropriately qualified professional.
May 31, 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.
May 17, 2019
New London-based rheumatology and hypermobility clinic for adults and children
Professors Rodney Grahame and Ian Chikanza 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 of diagnosis and management of hypermobility-associated disorders including the Ehlers-Danlos syndromes and the hypermobility spectrum disorders.
May 7, 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.