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We are celebrating


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

We should have been celebrating our Anniversary with a dinner and dance, but sadly due to Covid, this could no longer take place this year.

But, we are currently working on a celebratory edition of our annual newsletter, which will make its way to you in October – watch this space!

We would love for you to share your stories, your photos and your memories of the ED Society over the last 25 years and how we have supported you! Drop us a line, write us a story, or give us a mention on social media!
#Happy25EDSociety #25Years #Happy25 #Celebrate #Charity #CharityTuesday #EctodermalDysplasia #Memories #Support #SharingIsCaring #WeNeedYou #Family #Rare #Genetic

Virtual London Marathon October 2021


The London Marathon is is approaching fast…..! The ED Society managed to get a place for this year’s marathon and we are extremely grateful to Paddy O’Reilly for wanting to take on this huge task and fundraise for us.

A BIG thank you also to our Trustee Stuart Atkiss and Hayley Dewsbury for taking part in the Virtual Marathon in aid of the Society.

Please share your encouragement and support to them all to help spur them on.

Paddy’s money giving page.

Stuart’s money giving page.

“XLHED Research “EDELIFE” take one step closer to launching clinical trials”


August 2021

We have received some exciting news! EspeRare and Pierre Fabre have announced that the ER-004 clinical trial is now available to view on the ClinicalTrials.gov website.  

This study is now called EDELIFE and they will soon be launching the pivotal, clinical trial for x-linked hypohidrotic ectodermal dysplasia (XLHED).

Find out more about this XLHED research and read all the latest information 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

Welcome to the ED Society Francesca!

We are excited to share the news with you all that 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), she 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

This year will be Fran’s debut at Wimbledon. Make sure you tune in, and we will keep you posted on her success.

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

TABI Research

The Centre for Appearance Research has launched a new study called TABI (Teen Appearance and Body Image) to explore young people’s experience of appearance and body image. They are inviting all young people aged 11-17 years who are living in the United Kingdom to take part in the research by completing an online survey. You can complete the survey with this link – https://go.uwe.ac.uk/TABI

As a thank you for taking part, participants will be entered into a prize draw to win one of four £50 Amazon vouchers!

If you would like to find out more about this study or if you would like to complete the survey by paper instead, please contact Bruna Costa: Bruna.Oliveiracosta@uwe.ac.uk

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!