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.
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.
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. This is a great opportunity to transform the information about EDS that busy GPs have access to, improving the help people receive to manage their symptoms day to day.
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Charity news, patient stories, events, reearch & Ehlers-Danlos in the press