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Make a difference in your own way. Doing your own fundraising is your chance to support people affected by Ectodermal Dysplasia.

Whether you’re looking for ideas, inspiration or materials, this page has everything you need to kick-start your fundraising.

Upcoming Fundraising Events:

TCS London Marathon Sunday 2nd October 2022


We are very thankful that our charity place from 2021 has rolled over to 2022.  Member of the ED Society Paddy O’Reilly will be running on behalf of the ED Society.  We want you to join us in wishing him all the luck and encouragement and donate today – Paddy O’Reilly Raising for ED Society.

The virtual TCS London Marathon will take place on Sunday 2 October and you’ll have 23 hours, 59 minutes and 59 seconds (from 00:00 to 23:59:59 BST) to complete the 26.2 miles, which you can choose to run, walk or jog – making the event the most inclusive London Marathon ever. Fancy the challenge – find out more and sign up today.

We believe everyone who is affected by Ectodermal Dysplasia has the right to a normal lifestyle

Everything the ED Society do is to help better the lives of people affected by an Ectodermal Dysplasia. We receive almost all our funds from generous supporters.

Amazing people like you – who believe in our work – believe that everyone is worth supporting. We are incredibly grateful for your enthusiasm and effort, so thank you for joining us and helping to support the ED Society families.  We have had so many of you take part and organise some fantastic fundraising events and have been kind enough to tell us all about it.

Need some inspiration…..please take a look at some of our members fundraising stories.


In our ED Fundraising Pack, you’ll find tips, advice and lots of inspiration to help you make fundraising for Ectodermal Dysplasia a success, or you can get in touch with us via email if you would like to become a fundraiser.

Fundraising shouldn’t feel like a lot of hard work, it should be simple and make you smile. We’re here to support you with whatever you decide to do, so you can focus on all the fun stuff. If you’re stuck for ideas or want some advice on what fundraising materials you may need, don’t hesitate to contact us or take a look at the ideas page.

Say hello to our Fundraising coordinator Stuart Atkiss

Thanks again and have a great time fundraising!