Home » February is Ectodermal Dysplasia Awareness Month

February is Ectodermal Dysplasia Awareness Month

white circle logo with green helix images and blue writing stating february is ecotdermal dysplasia 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.

It is the time of the year when we come together and have a shared commitment to making a difference. Our mission is to increase awareness, build understanding, and provide support to those affected by this rare genetic condition.

This February, we invite you to embark on a journey with us – a journey that continues to transform lives.

Coming up

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.

International ED Awareness Day – 20th February

Stand up to ED and dedicate INTERNATIONAL ED AWARENESS DAY to wearing blue – a colour that symbolises hope, inspiration, and solidarity.

Let’s be loud and proud, we encourage you to get family, friends, work colleagues, and schools involved to help you fundraise. Something as simple as a £1 donation to do this will benefit the Society and our ED Community so much.

In the vast spectrum of colours, blue stands out as a beacon of hope. It represents the optimism that fuels our mission to make a difference in the lives of those affected by ectodermal dysplasia. As we wear blue together, we can unite in a collective expression of hope for a brighter future.

i support rare disease day 2024 poster in purple green blue and pink text

Rare Disease Day – 29th February

Rare Disease Day is a global movement raising awareness and generating change for the 300 million people worldwide living with a rare disease, their families and carers – and this year it falls on the rarest day of a leap year! Find out more here

In an effort of global solidarity, you are invited to light or decorate your home with the Rare Disease Day colours at 7 PM your local time on 29 February 2024. Collectively, the aim is to change and improve the lives of 300 million people worldwide.

Sweat it out for Ectodermal Dysplasia – 29 miles in 29 days

Will you join us? The challenge is to run 29 miles over the 29 days of February. You can split the miles up however you like throughout the month, but it works out as only one mile each day. Whether you run, walk, dance or climb, be part of the team, go the extra mile and #SweatItOut for ED.

You can find out more information and sign up here.

image of someones feet walking in light grey trainers.  With blue and white writing with information about the sweat it out for ed challenge this february

Ways to get involved

  • Spread the Word: You can help to educate the community by sharing our posts, infographics, and your personal stories on social media. Education is the key to understanding, and your voice can be that change.
  • Donate: Your generosity fuels our mission. Every contribution, big or small, makes an impact. Head to our donation page to make a difference today.
  • #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.)
  • Host an Event: From social gatherings to fundraising events, your creativity knows no bounds. Host an event in your community to raise awareness and vital funds for ED.
  • Social Media: Change your profile pictures to one that celebrates Ectodermal Dysplasia Awareness! Why not use the 2024 ED Awareness logo?
  • Wear Blue on the 20th: We encourage you to get family, friends, work colleagues, and schools involved by wearing blue to help you fundraise. Something as simple as a £1 donation to do this will benefit the Society and our ED Community so much. Don’t forget to share on social media an tag us. #EDAwarenessMonth #InternationalEDAwarenessDay
  • #SweatItOut for ED – Will you join us for our February challenge? 29 miles, in 29 days? Do it your way.
  • Get your ED Merch: Help raise awareness by showing off and sharing your new purchases! Visit our Online Shop.

Get involved in any way you can. Because together, we can create change. #StrongerTogether.

🌟 Championing Equity & Empowerment! 🌟

Our incredible Ambassador, Hannah Harpin, is helping us shine a light on the abilities of every child affected by ED in a heartwarming video this #EDAwarenessMonth. Let’s embrace diversity, inclusion, and endless possibilities!

Resources –

Social Media Profile Picture

white circle logo with green helix images and blue writing stating february is ecotdermal dysplasia month

I Love Someone” Poster

blue pink and purple heart poster with the ed awareness month logo and text reading i love someone affected by ed

Know the signs

poster with blue and yellow squiggle design showing 5 different signs of ED, teeth, sweat glands, nails, skin and hair

Members Stories

EEC, my bladder and me

Our Journey

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

a collage of fundraisers for the ed society with a blue background

We want to thank all those in our ED community who volunteer their time by fundraising and to those who have already donated. 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.