Home » Ectodermal Dysplasia Awareness Month – June 2020

Ectodermal Dysplasia Awareness Month – June 2020

Every year in June, we ask our ED community to unite with others affected by ED to help us raise awareness of this rare condition.

The Ectodermal Dysplasias are genetic disorders affecting the development or function of the teeth, hair, nails and sweat glands. More than 180 different types of Ectodermal Dysplasia have been identified. Depending on the particular type (syndrome), an Ectodermal Dysplasia can also affect the skin, the eyes or ears, the lining of the airways, the development of fingers and toes, the nerves and other parts of the body.

awareness logo

It’s up to you how you show your support. Due to the coronavirus pandemic, fundraising will be a little bit different this year – but it does not have to stop!

We know it is difficult during these strange times, but you can still get involved and support the ED Society from the comfort of your own home – virtually. Check out our virtual fundraising ideas.

What can you do?  You could hold your own small event (following government guidelines on social distancing), donate, share your story, buy one of our ED books, or simply give us a mention on social media.

We can help by sending you fundraising material such as sponsor forms, leaflets and ED wristbands to help raise funds at your event. Download our fundraising pack

Change your profiles on social media to one that celebrates Ectodermal Dysplasia Awareness! Why not use our ED Awareness logo for 2020.

Pass the Pound Campaign

pass the pound

During Ectodermal Dysplasia awareness month this year, we are asking you all to join our campaign and help Pass the Pound.

Help us to reach our target of £5,000 to enable the Society to thrive and to keep our support services running.

We know the impact of the Coronavirus is affecting everyone, which is why we are asking you to donate only what you can.

Although the Society is surviving right now, the lasting impact of this pandemic will hit us later on, with most fundraising events we rely on now postponed to next year.

We are positive that with hard work and support from our members and the ED community, we can reach this target.

Get involved……Donate and Pass the Pound here

Find out How your donations make all the difference

Spread the Word

You can help to educate your community by sharing facts, videos and resources about ectodermal dysplasias, either online or in-person.

ed book

“As part of ED awareness month this June, Gallacher and the ED Society are encouraging people to learn more about the condition and think of way to use their skills to help people affected by it.” – Article in the Professional Advisor June 2020

The brave little four-year-old who went through heart surgery – and now he is coping with a rare disorderArticle in Hartlepool Mail June 2020

Share your story

If you’ve seen our members stories, you know how inspiring it can be to tell others about your journey with ectodermal dysplasia. Why not share yours for ED awareness month.


Thank you to those who have chosen to open up and share their story and experiences with us all during ED awareness month this year……….

“Even if you only remember the name, it’s a step in the right direction” – Leonie Watson

“My favourite thing to wear is my smile”Ami Hopkins

No matter the time of year, you can spread the word about Ectodermal Dysplasia and join us in raising awareness for our incredible community through support, research, fundraising, volunteering and more.

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 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.