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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

November 2018 –

Our Autumn newsletter is here – happy reading!!

ED books –

We are very proud to have produced two books about Ectodermal Dysplasia; “Everybody’s Different” and “A Guide to Ectodermal Dysplasia”.

Everybody’s Different is an introduction to Ectodermal Dysplasia which has been designed for children aged 4+, whether they are affected by ED or not, and allows parents and schools to explain the condition in child-friendly terms.

A Guide to Ectodermal Dysplasia is an extensive 48-page booklet of information about ED for individuals, parents, families, medical professionals and other community officials in the UK.

Please have a look in our Shop for more information and how to buy.


Christmas Raffle –

Tickets for our Christmas raffle are now ready and will be sent out with our next newsletter (end of this month).  If you think you are able to sell bulk tickets to friends, family, work colleagues etc. please get in touch – info@edsociety.co.uk.  The raffle will be drawn on 14th December.  All proceeds from the sales of the tickets will help the Society tremendously in the need for new office equipment.




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!


September 2018 –

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

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!