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Ectodermal Dysplasia Awareness Month – February 2021

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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.

You may know we usually hold the awareness month in June, but this year have moved it to February. This is to coincide with the awareness month worldwide, the more of us who join together….. the bigger impact we can make in #SupportingANormalLifestyle.

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.

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.

Get involved today!

How can I help?

It’s entirely up to you how you show your support. Fundraising will look a little different this year – but don’t let it stop you! Check out our virtual fundraising ideas here.

You could hold your own small event (following government guidelines on social distancing)

Donate here.

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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 to buy some ED merch…….help raise awareness by showing off your new purchase! ED Shop.

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

Go blue for International Ectodermal Dysplasias Awareness Day and celebrate with us on Saturday 20th February. Don’t forget to share with everyone on social media. (Remember #EDAwarenessMonth #SupportingANormalLifestyle #EDAwarenessDay)

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

Members Stories

“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

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

“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

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.

thank you