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.
August 30, 2017
Management and wellbeing conference 2017
Our Management and Wellbeing Conference 2017, in collaboration with the HMSA, will take place on Saturday September 30th and Sunday October 1st at Chesford Grange Hotel, Warwick. The conference will provide members with practical health and wellbeing advice to manage their condition. Tickets are still available.
July 31, 2017
Fundraiser of the Month – July 2017 – Doug Stanway
Doug Stanway did the London to Paris Bike ride and fundraised an incredible £6,046! With more money still coming in!