News and events

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 […]

18 January, 2019

Ambassador Anoushé Husain climbs with EDS in new short film

Ehlers-Danlos Support UK ambassador paraclimber Anoushé Husain talks about climbing being her physiotherapy for her EDS in a new short film released this week. The film, called If I Can, shows Anoushé as she ventures away from the indoor climbing wall and into outdoor climbing. Anoushé talks about how EDS affects her and how she finds release […]

20 November, 2018

Statement on the law regarding cannabis-based products for chronic pain

The following joint statement is from the HMSA, the Ehlers-Danlos Support UK and The Ehlers-Danlos Society on cannabis-based products, chronic pain, and hypermobility-related disorders and is regarding changes in the law in the United Kingdom. This statement is for people with chronic pain and hypermobility disorders such as the Ehlers-Danlos syndromes and hypermobility spectrum disorder (HSD). […]

31 August, 2018

Fundraiser of the month – August – Stephen Lister & Josh Waddell

Stephen Lister and close friend Josh Waddell took on the incredible challenge of the Edinburgh Marathon in May as Stephen’s sister Abigail has EDS. Abigail was finally diagnosed in 2017 after years of struggling to know what was wrong. She lives with daily pain, despite have 10 surgeries. Together, Stephen and Josh raised a fantastic […]

22 August, 2018

Meet our new Medical Advisory Panel members

We are very pleased to welcome two new members to our Medical Advisory Panel. Lisa Jamieson, pharmacist and nutritionist and Dr Kate Barnes, GP, Integrated Health Practitioner and educator, bring welcome additional knowledge, skills and experience to the panel which advises EDS UK on the provision of best-practice clinical treatments for people with EDS in […]

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