Men’s Support Group Survey
EDS UK would like to know where our male members are in the UK, and if you would like to have a men’s meeting in your area. Please kindly respond to our survey online here. It should take no longer than a few minutes.
Managing EDS and muscle conditioning webinar
EDS UK was proud to host another interactive webinar with Dr. Jane Simmonds on Friday 19th January.
Understanding PoTS webinar
EDS-UK where proud to host a live Q&A webinar on understanding and living with Postural Orthostatic Tachycardia Syndrome (POTS).
“12 – 24” – A film about EDS – Raising funds for vital research to help make lives better
Today EDS UK is launching "12-24” (supported by The Ehlers-Danlos Society). This is a short film that marks the start of a major fundraising campaign to pay for research to test whether dietary changes can reduce symptoms and improve quality of life for people with EDS.
Could you be our new treasurer?
We're looking for a new Treasurer who will also join our Board of Trustees. If you are financially confident, enthusiastic about making a difference and want to gain national board experience, this could be just the role for you
NICE guidelines for chronic fatigue syndrome/ME to be updated
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. As a result, the guidelines will be modified, which is great news.
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 is working with the UK Forum for Genetics and Insurance to gather a better understanding of patients’ experiences, concerns and challenges when applying for insurance.
Fundraiser of the Month – April 2017 – Hannah Bowen
Thank you to Hannah who raised an incredible £1,200 who decided to raise money for Ehlers Danlos Syndrome UK in a way I feel relates to Lucy. For all 40 days of lent, I will be giving up some of my favourite food and drinks, carefully selected by myself and some of the people who know me the best.
Medically unexplained symptoms or EDS?
A letter by EDS UK's Primary Care Advisor Dr. Emma Reinhold was selected as Editor's Choice in The British Journal of General Practice this week. It 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.
First charity partner for NHS Confederation conference
EDS UK was chosen by the NHS Confederation to be its first charity partner at its annual conference in June 2016. Patron Cherylee Houston was in attendance to help raise awareness of EDS.
More News Articles
Charity news, patient stories, events, reearch & Ehlers-Danlos in the press