Happy Ectodermal Dysplasia Awareness Month.
Each year, we ask our ED community to unite with others affected by Ectodermal Dysplasia to help us raise awareness of this rare condition.
Ectodermal Dysplasia Awareness Month is celebrated globally during February. The more of us who join together….. the bigger impact we can make.
More than 180 different types of Ectodermal Dysplasia have been identified.
No matter the time of year, you can help spread the word about Ectodermal Dysplasia and join us in raising awareness for our incredible community through support, research, fundraising, volunteering and more.
Coming up
Pass the Pound
Rare Revolution Instagram #TuesdayTakeover
Coffee mornings
Celebrate this #EDAwarenessMonth by holding a coffee morning in February. Friends, Family, Colleagues, Small, Big? Join us and others in the ED Community this February and lets bake a difference and get fundraising for Ectodermal Dysplasia
International ED Awareness Day – Monday 20th February
Stand up to ED and dedicate INTERNATIONAL ED AWARENESS DAY to wearing blue. Lets be loud and proud, get family, friends, colleagues, schools involved to help you fundraise.
Something as simple as a £1 donation to do this will benefit the Society and our ED Community.
Rare Disease Day – Tuesday 28th February 2023
Finish the month by joining forces for Rare Disease Day on – where different rare disease organisations all work together to raise awareness.
In an effort of global solidarity, Rare Disease Day invite you to light or decorate your home with the Rare Disease Day colours at 7 PM your local time on 28th February 2022.
Collectively, the aim is to change and improve the lives of 300 million people worldwide.
How can I help?
It’s entirely up to you how you show your support – Check out our fundraising ideas here.
You could hold your own small event
Donate here.
Spread the word – You can help to educate your community by sharing facts, videos and resources about ectodermal dysplasias, either online or in-person.
#SharingIsCaring. Telling others about your experiences with Ectodermal Dysplasia is crucial to raising awareness of the condition. Share your story with friends in a video or photo on social media (don’t forget to tag us)
Don’t forget you can buy some ED merch…….help raise awareness by showing off your new purchase! ED Shop.
Change your profiles on social media to one that celebrates Ectodermal Dysplasia Awareness! Why not use our ED Awareness logo?
Celebrate those you love – tag us in a photo holding our poster
Go blue for International Ectodermal Dysplasias Awareness Day and celebrate with us on 22nd February. Don’t forget to share with everyone on social media and tag us – #EDAwarenessMonth #EctodermalDysplasia #NoSweat
And finish the month by joining forces for Rare Disease Day on 28th February 2021 – where different rare disease organisations all work together to raise awareness.
We can help by sending you fundraising material such as sponsor forms, leaflets and ED wristbands to help you with your event. Download our fundraising pack
Pass the pound
Rare Revolution #TuesdayTakeover
Resources –
Profile Picture
“I Love Someone” Poster
Know the signs
Members Stories
From a Paralympians Prospective
“Even if you only remember the name, it’s a step in the right direction” –
“My favourite thing to wear is my smile”
Our fundraisers
We want to thank all those in our ED community who volunteer their time by fundraising and to those who have already donated to the Society during this ongoing difficult time for us all. The ED Society depend on your donations for its future.
Your enthusiasm, donations and time can make a real difference in the lives of children and adults affected by an Ectodermal Dysplasia syndrome. When you donate to the Society, your gift will immediately go to work in providing support services and hope to our families.