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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

marathon

The London Marathon is only 4 months away! The ED Society have managed to get a place for this year’s marathon and are 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!

Register for the Virtual London Marathon 2021 here

“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

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

“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

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!