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We would like to invite you to attend or support the events occurring within the ED Society community.  To stay up to date please keep checking here and take a look at our News page.

If you are thinking of fundraising for the Society, please contact us with the details so we can promote your event on the ED Society’s website and Facebook group to help generate more support and hopefully more income.

For information regarding how we can help you please visit the Fundraising section of our website.

Ectodermal Dysplasia Awareness Month event Ectodermal Dysplasia Awareness Month

This year, ED Awareness month will be throughout June 2019.  More info..

Annual General Meeting

The next AGM will be held in May 2019 in Cheltenham – Saturday 11th May 10.30am

The ED Christmas Party is making a Comeback!!E D Christmas party 2019

Last year we announced we would no longer be holding our annual Christmas party – mainly due to lack of funds and also wanting to venture into other ideas of how to get together.

After many discussions in the ED office, taking feedback from our members and the recent questionnaires, we have decided to stick with our original party format.

However, at the last Trustee meeting it was decided that the ED Christmas Party should be held every 3 years. So, our first party will be Saturday 7th December 2019.

As before, it will be held at the Jurys Inn hotel in Cheltenham who have always been accommodating to our needs and it is the best situated hotel being just off the motorway and opposite the Travelodge for members wishing to stay over.

Once again, some of our Medical Advisory board will attend and will be there to help with any questions you may have for them regarding dental, dermatology, genetics etc.

Any ideas are still greatly welcomed, anything you wish to see that has been different to our previous parties please let us know!

We are so excited to begin planning and look forward to seeing so many of you again!  More details will follow in the next few months!  But for now – SAVE THE DATE!!