Stay up to date with the ED Society’s latest news and events. If you would like to share a story or news item with us, please send to info@edsociety.co.uk
Stay Informed and Stay Safe
For all the latest information and updates regarding Ectodermal Dysplasia and the coronavrius pandemic, please visit our dedicated Covid Updates page.
“EspeRare partners its XLHED program with Pierre Fabre” – December 2020
EspeRare has entered into a partnership with the Pierre Fabre group to develop ER004, a novel in utero protein replacement therapy for the treatment of X-Linked Hypohidrotic Ectodermal Dysplasia (XLHED), a rare pediatric genetic disease.
Find out more about the XLHED research and read the latest press releases here – XLHED Clinical Trials
London Marathon 25th April 2021
Great news – the ED Society have managed to get a place for next year’s London Marathon, which has proven to be a really beneficial fundraiser to the Society in previous years.
If you think you would like to run the London Marathon on behalf of the ED Society, and you are confident you can drum up some big support and donations, please get in touch.
The place costs the ED Society £400, so it would be great if you know you will be able to raise more than this for us.
We will announce who the position will go to in August after a live draw.
Please let us know your interest by emailing info@edsociety.co.uk
“The greatest thing in life is to do what people say you can’t do”.
January 2021
Francesca Jones will be heading to the Australian Open this week on a mission to inspire others trying to overcome physical difficulties in pursuit of their goals.
She was born with Ectrodactyly Ectodermal Dysplasia (EEC), which affects the fingers and toes. Fran has three fingers and a thumb on each hand, three toes on her right foot and four toes on her left. She also started life with webbed fingers. The 20 year-old from Bradford has to use an extra lightweight racket with an especially thin handle to accommodate her grip.
Francesca Jones wants to inspire others to overcome adversity – Daily Mail