Home » News


News & Events

Stay up to date with the ED Society’s latest news and events.  If you would like to share a story or news item with us, please email: info@edsociety.co.uk


The ED Society’s funds are running out!

To continue supporting you we desperately need your help.  We are therefore holding a fundraising fortnight – 10th – 23rd September.

Can you help by organising a small event to raise much needed funds? Fundraising ideas/packs can be found here.

Even if you are not able to fundraise (we appreciate you are all busy) you can still help by making a donation directly to the Society.  We may be able to boost your donation by 25% through Gift Aid.

If every family sent just a £10 donation it would help secure our support for another year!

You can make a donation here


September 2018 –

Our Summer newsletter is now available to read here – please note new membership forms will be coming out shortly for 2019.



Dont forget to use Easyfundrasing to make all your online purchases as we will earn commission from this.  Easyfundraising is simple to use and the most commonly used retailers are listed like AMAZON & Ebay.  Many more have now been added too!  Remember we benefit from all your purchases!


May 2018 –

The Spring 2018 Newsletter is now ready – we hope you enjoy and please make sure to take note of the cooling article to prepare for the hotter days!

ED Merchandise –

We are very pleased to be able to offer ED Society merchandise.  Please take a look and help to show your support!


26th April 2018 –

Following the disappointing news in December 2017 that the therapeutic programme for XLHED had been halted, The ED Society are delighted to bring the exciting news that EspeRare have today issued a press release stating they are now relaunching the programme. This will bring hope to the Ectodermal

Dysplasia community around the world.  Please read the attached EspeRare Press Release. 


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!