December 5, 2017
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
November 21, 2017
2017 Management and wellbeing conference videos
Videos from our our Management and wellbeing conference in 2017
October 31, 2017
EDS UK Christmas cards are here!
Buy your Christmas cards here from our selection of 12 designs. All profits go to EDS UK.
September 22, 2017
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.
August 31, 2017
Fundraiser of the Month -October 2017 – Kate Owen
Philip Evans and 6 of his friends climbed Mount Kilimanjaro in August to raise money and awareness for Ehlers-Danlos Syndrome.
Thank you to everyone who took part and those who donated, we raised an incredible £2,472.42
August 30, 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 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.