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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.

Covid Guide

Virtual London Marathon October 2021


The London Marathon is only 6 months away! The ED Society have managed to get a place for this year’s marathon and extremely grateful to Paddy O’Reilly for wanting to take on this huge task.

Please help show all your enthusiasm, encouragement and support to Paddy, and any donation received will be extremely appreciated.

Head over to Paddy’s money giving page here.

We were also lucky to receive 3 charity ballot places – but we still have 2 left that need to be filled. Thank you to our fundraising coordinator, Stuart Atkiss, for stepping up! This will be his second time!

Do you think you have what it takes? Do you want to support the ED Society UK and run in aid of Ectodermal Dysplasia? Please get in touch: info@edsociety.co.uk

“EspeRare partners its XLHED program with Pierre Fabre” – December 2020

Professor Holm

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

“Teen fulfils her dream of signing with a modelling agency after overcoming suicidal thoughts triggered by years of bullying”

hannah modelling

Hannah Harpin, 18 years old, is affected by Hay-wells syndrome – a type of Ectodermal Dysplasia.

We have known Hannah and supported her family since she was 6 years old. We can see how Hannah is going from strength to strength and all of us at the Society could not be more proud of how far she has come – You truly are an inspiration to our Ectoderma lDysplasia community Hannah.

You can read more about Hannah’s story here – https://www.dailymail.co.uk/femail/article-9439945/Woman-model-despite-suffering-rare-condition.html

The #GreatEDEasterBakeOff

keen cake

Thank you to all those who took part in our bake off this Easter. You all did an amazing job and you certainly made it difficult to decide on the winner.

But, we are pleased to announce the ED Star Bakers are……

Edward and Elsie Keen – Congratulations!

Can you recommend a Doctor or Specialist?

recommend specialist

Sadly, many professionals have never heard of Ectodermal Dysplasia…..but maybe you can tell us a great dentist, dermatologist, geneticist etc. you have visited?

We can then update our professionals list which we use to support our ED community. Head over to Doctor and Specialist Recommendations

“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.

Fran Jones

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 adversityDaily Mail

Anybody looking for a bit of inspiration at the start of 2021 could do much worse than look to Francesca Jones.Eurosport

We are very fortunate to have members who wish to share their stories and ED journeys with us, either by writing articles for our newsletters or writing their own blogs! 

Visit our Parents page to have a read for some extra reassurance and support that you are not alone!