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News & Events

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.

Whether it is tips, information, advice or you just need someone to talk to, we are here to listen and support you through this time.

Covid Guide

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


EspeRare Receives FDA Breakthrough Therapy Designation for Investigational Prenatal Treatment ER-004 in X-Linked Hypohidrotic Ectodermal Dysplasia (XLHED)

July 2020


Thank you to EspeRare for their amazing work on continuing to research and develop a potential in-utero therapy that would provide functioning sweat glands for those born with XLHED – This is exciting research news to be sharing with you all

“This innovative treatment approach has the potential to fundamentally change the lives of these patients and may also pave the way for other prenatal treatments to correct genetic diseases before birth”

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!  Head over to our Parents page to have a read and hopefully find some extra reassurance and support that you are not alone!