EDS UK news

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 […]

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 […]

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 […]

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 […]

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). […]

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 […]

29 May, 2018

First EDS toolkit launched for GPs

The Royal College of General Practitioners (RCGP) has launched an Ehlers-Danlos syndromes (EDS) toolkit for GPs and healthcare professionals. The toolkit, created in partnership with EDS UK and funded by the charity, aims to improve the recognition, response to and management of EDS in primary care. The toolkit sets out the latest thinking in EDS, including […]

3 April, 2018

Listen to our BBC Radio 4 appeal

 Our lovely supporter Toni Madigan tells her EDS story and talks about how she benefited from contacting the EDS UK helpline. Please share information about the appeal and don’t forget to listen! The  BBC Radio 4 charity appeal on Sunday 22nd April was for EDS UK.  We are so pleased that the Ehlers-Danlos syndromes and the […]

23 January, 2018

Managing EDS and muscle conditioning webinar

EDS UK was proud to host another interactive webinar with Dr. Jane Simmonds on Friday 19th January. She is a physiotherapist specialising in hypermobility-related conditions, practising at both University College London Hospital and St. John and St. Elizabeth Hospital. The recording of the webinar can be viewed here. In addition Jane spent time with us […]

23 January, 2018

Men’s Support Group Survey

EDS UK is looking to run a series of men’s meeting beginning late spring around the UK. Men’s meetings are a little different to local area meetings. They are less formal, and have a more sociable feel. They are for all male members touched by EDS, including patients, fathers, husbands and male carers. Meetings are […]

12 January, 2018

Understanding PoTS webinar

EDS-UK were proud to host a live Q&A webinar on understanding and living with Postural Orthostatic Tachycardia Syndrome (POTS). The webinar featured Dr. Mark Belham, a consultant cardiologist at the Cambridge Heart clinic, Addenbrookes Hospital.

22 September, 2017

NICE guidelines for chronic fatigue syndrome/ME to be updated

Some types of EDS are often misdiagnosed as chronic fatigue syndrome/myalgic encephalomyelitis (ME). EDS UK recently submitted comments on the NICE guidelines for chronic fatigue syndrome/ME as NICE had decided there was no new evidence to warrant an update (the guidelines were written in 2007). As a result of the new information from EDS UK and […]

30 August, 2017

Accessing insurance with a genetic condition

Accessing appropriate insurance can be a significant problem for many patients and families affected by genetic conditions. Genetic Alliance UK regularly receives telephone calls and emails from people affected by genetic conditions who are finding it difficult or impossible to access appropriate or affordable insurance cover. Many patients are not aware what insurance companies are […]

23 June, 2017

Medically unexplained symptoms or EDS?

EDS UK’s Primary Care Advisor Dr. Emma Reinhold had a letter published in The British Journal of General Practice this week highlighting the frequent diagnosis of ‘medically unexplained symptoms’ for people with EDS and related conditions. She called on GPs to educate themselves about how these conditions present. Dr. Reinhold’s letter is the Editor’s Choice […]

8 May, 2017

EDS in the spotlight

EDS UK is proud to be funding a project with the Royal College of GPs to increase knowledge about EDS and related conditions in primary care. Each year, the Royal College selects clinical priorities and 12 month ‘spotlight projects’ and this year, an application by GP Dr Emma Reinhold and EDS UK to make EDS a […]

30 April, 2017

Fundraiser of the Month – April 2017 – Hannah Bowen

Thank you to Hannah who raised an incredible £1,200!! When I was in my final year at school, I became a big sister and mentor to many of the year nines. I jokingly called them my “minions” and loved spending time with them and looking out for them whenever they needed someone older and (not […]

20 June, 2016

First charity partner for NHS Confederation conference

EDS UK member, Lisa Tasker, nominated us to be the first ever charity partner for the NHS Confederation Conference on 15th – 17th June. We were lucky enough to be chosen and this gives us a fantastic opportunity to discuss our EDS services with the policy-makers and NHS commissioners attending. EDS UK’s patron, Cherylee Houston, […]

12 May, 2016

Breaking Down Barriers

We are proud to be working on a new project, funded by The Sylvia Adams Charitable Trust, called Breaking Down Barriers. The project aims to help patient organisations like EDS UK to better support diverse communities. We will be working with eight other charities and a team of experts over three years to see how […]

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