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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

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

Professor Holm
Prof. Holm Schneider

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

london marathon

“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

Bullied Because Of My Rare Genetic Condition

November 2020

We are super proud of Hannah Harpin, who we have know since she was 6 years old, for opening up about her Ectodermal Dysplasia (Haywells syndrome) in a You Tube documentary.

“AN 18-YEAR-OLD who was bullied over her rare genetic condition – that severely affects her appearance – has silenced her critics by embracing her disorder on social media”

After facing many struggles throughout her school years, Hannah is now in college and has been offered a job mentoring disabled college students.  Keep up the good work Hannah, you are smashing it.

Follow more of Hannah’s story: https://www.instagram.com/hannahharpin/

Everybody’s Different

November 2020

Our children’s book Everybody’s Different is now available to buy on Amazon.

This introduction to Ectodermal Dysplasia has been designed for children age 4+, whether they are affected by ED or not, and allows parents and schools to explain the condition in child-friendly terms.  It facilitates empathy and gives children the ideas and motivation to then help their peers.
Remember to sign up to Amazon Smile too and you can create a FREE donation for the ED Society!
Happy Shopping!
Buy here.

ED book

The Gift Aid Emergency Relief Campaign 2020

We are proud to be ambassadors for the The Gift Aid Emergency Relief campaign, which is calling for a temporary change in the rate at which Gift Aid is paid out.  This is to help charities access vital funds they need to survive, at a time when they have never been more needed.

Charities are anticipating a 24% loss in income this year which would mean a £12.4 billion loss to the sector as a whole. The proposal of a two-year Gift Aid Emergency Relief scheme is modelled on a previous successful Gift Aid Transitional Relief in 2008 (which saw Gift Aid increase to 28% for three years).

campaign

For example, the change would mean a £100 donation from a UK taxpayer would increase to £133.33 for the charity once Gift Aid has been claimed (compared to £125 as it is currently).

You can find more information on the campaign and how you can help here.

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!