Ectodermal Dysplasia Awareness Month

February 2025

It’s that time of year again—Ectodermal Dysplasia Awareness Month is here!

February is recognised globally as ED awareness month, a time where we can all come together to shine a light on Ectodermal Dysplasia (ED), and we need YOU to help make this the most impactful month yet.

Every year, we see incredible support from our ED community, who help spread the word, raise much needed funds, and share stories of hope. But we need even more voices, more actions, and more awareness this time around.

Here’s how YOU can get involved:

It’s entirely up to you how you show your support, but here are some ideas:

Spread the Word

  • Share facts and information about ED on your social media.
  • Post about your own experience with ectodermal dysplasia – you could share your story with friends in a video or photo on social media (don’t forget to tag us)
  • Use our hashtag #EDAwarenessMonth on social media to help get the conversation started.
  • #SharingIsCaring – telling others about your experiences with Ectodermal Dysplasia is crucial to raising awareness of the condition.
  • Change your profiles on social media to one that promotes Ectodermal Dysplasia Awareness! Why not use our ED Awareness logo?
  • Spread the love by using our “I love someone affected by ED poster”

Host a Fundraising Event

  • Whether it’s a virtual event, coffee morning, bake sale, a walk, run or a bit of dancing, your fundraising efforts will help us continue our important work.
  • Take part in our #SweatItOut For ED Challenge – 28 miles (or more) in 28 days – get in touch to sign up.
  • Need ideas? We can help!!

Donate to Keep Us Going

  • Every donation helps us provide resources, support, and drive awareness for ED. Whether it’s a one-time gift or a regular contribution, your generosity keeps us moving forward. Click here to donate.
  • You could buy some ED merchanidse……. help raise awareness by showing off your new purchase from the ED Shop.
4 ed society staff stood looking at the camera wearing blue for international awareness day

Go Blue on #InternationalEDAwarenessDay

  • We encourage our ED community to show their support by wearing blue on 20th February, and sharing a photo on social media with the hashtag #EDAwareness. A simple gesture that can spark meaningful conversations! Also – get family, friends, and work colleagues involved by having a  wear blue day at work in return for a donation.

Rare Disease Day 28th February

  • Finish the month by joining forces for Rare Disease Day where different rare disease organisations all work together to raise awareness all around the world.

We can help by sending you fundraising material, leaflets, and merchandise like our ED wristbands to help you with any event – please get in touch.

ED Awareness Month Resources