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Do you have a son affected by XLHED and want to be a part of ground-breaking research for Ectodermal Dysplasia?

EDELIFE and Pierre Fabre would like to hear your views, perspectives, and priorities on raising a boy living with XLHED.

To get involved, you can find more information and contacts details here.

We are proud to have become an official charity partner of UK Charity Week!

Charity Partner

⁠UK Charity Week (or #UKCharityWeek) is an annual charity campaign designed to allow the people of the United Kingdom to place awareness and fundraising for charities high on the national agenda, and at a time of the year when people are statistically at their most giving.

The ED Society cannot wait to get involved in this years #UKCharityweek – what will you be doing?

Head over to our Fundraizing Hero dashboard for all the info and resources you need to take part:

Be A Fundraizing Hero for the ED Society

We are celebrating


2021 marks 21 years of the ED Society being a registered charity, and 25 years of voluntary service from our CEO, Diana Perry.

Our celebratory newsletter is out NOW.

#EDSAnniversary Newsletter 2021

Drop us a line, write us a story, or simply celebrate with us on social media!
#EDSAnniversary #Charity #EctodermalDysplasia #Memories

Virtual Christmas Party – 4th December 2021


We are pleased to announce that we are going holding a VIRTUAL Christmas party on Saturday 4th December.

What a line up we have – we are very excited to have some great guests join us. Duncan the magician will be providing the entertainment, A Q&A with two of our Medical Advisory board about the temperature research, and interactive story telling with bestselling author Jen Campbell who is affected by EEC……

Find out more about our special guests here

The party will finish with a Family Quiz, and don’t forget to take part in our Festive competition to be in with the chance of winning your design on a t-shirt!

Party registration forms were sent with our recent newsletter. If you did not receive yours, and wish to join and would like more information, please get in touch info@edsociety.co.uk

Welcome to the ED Society Francesca!

Up and coming British tennis player, Francesca Jones, has agreed to come on board as the Patron of the ED Society.

Francesca was born with Ectrodactyly Ectodermal Dysplasia (EEC)

Find out more about Fran here – We Welcome Up and Coming Tennis Player as Patron of the ED Society

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

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!