The Ectodermal Dysplasia Society

25/09/2026

🇩🇰 A WEEKEND OF CONNECTION, COLLABORATION & COMMUNITY IN COPENHAGEN

What a fantastic few days in Copenhagen!

Last weekend, 15 representatives from four continents came together for the EDIN meeting, bringing leaders from Ectodermal Dysplasia organisations around the world into one place to share ideas, experiences and knowledge.

It was a valuable opportunity to strengthen existing relationships, make new friends and connections, and learn from one another through presentations, discussions and interactive sessions.

An important part of the weekend was sharing knowledge and experience to help newer and smaller ED groups developing across the world navigate the challenges of setting up, finding reliable information and building support for their own communities. 💙

We were also kindly given a tour of Handicaporganisationernes Hus – The House of Disabled People’s Organisations, described as one of the world’s most accessible office buildings. It was fascinating to see how accessibility and inclusion have been considered throughout the building and to learn more about the organisations working there.

We finished our time together with a Viking boat experience – working together, rowing together and relying on one another to keep moving in the same direction. It felt like a fitting way to end a weekend that had been all about collaboration and working towards the same goals.

We may represent different organisations, countries and communities, but ultimately we are all working towards the same thing: better awareness, understanding, support and opportunities for people affected by Ectodermal Dysplasia around the world.🌍

A huge thank you to everyone involved for such a welcoming, inspiring and enjoyable weekend. We return home with new ideas, new connections and plenty to build on together.💙

20/09/2026

What a great first day in Copenhagen! 🇩🇰

Yesterday was packed with insightful talks, presentations and discussions, finishing with a brilliant interactive session with our fellow international ED leaders.

Today, we’re swapping presentations for something a little different…

⚔️ We’re Vikings for the day! 🛡️

And it turns out there’s a fitting message behind today’s activity too. When you’re all in the same boat, you have to rely on each other, work together and row in the same direction to reach your destination. 💙

A perfect reflection of the theme of this weekend – bringing international ED leaders together, coordinating our efforts, sharing ideas and working towards the same goals for the global ED community. 🌍💙

19/09/2026

🇩🇰 GOOD MORNING FROM COPENHAGEN! 💙

Diana and Danielle are excited to be here this weekend for the Ectodermal Dysplasia International Network (EDIN) meeting, spending time with our ED leaders from around the world. 🌍

After a lovely evening getting to know everyone, Day One is underway!

We’re kicking things off with presentations, research and lots of discussion as we share ideas, learn from one another and look at how we can continue working together to support the global ED community. 💙

Looking forward to a great weekend ahead — and we’ll keep you updated! 🇩🇰✨

15/09/2026

🎥 30 MESSAGES FOR 30 YEARS! 🎉

We’re looking for 30 people to record a short message to mark 30 years of the ED Society – which we’ll bring together into one very special anniversary video. 💙

We would love to hear from:

👨‍👩‍👧‍👦 Families and individuals in our ED community
🩺 Clinicians and healthcare professionals
💙 Supporters and fundraisers
⭐ Friends and familiar faces who have supported us along the way
🤝 Charities, organisations and partners we’ve worked with

Taking part couldn’t be easier.

Simply record a short video saying:

“Happy 30th Anniversary, ED Society!” 🎉

You can stop there, or if you’d like, add a few words about what the ED Society means to you, a favourite memory, or a wish for our next 30 years.

📱 Film in portrait
⏱️ Keep it short – around 10–20 seconds is perfect
🎥 Make sure you’re somewhere bright and quiet
💙 And most importantly – just be yourself!

Could YOU be one of our 30?

Please send your video to us at [email protected]

11/09/2026

Campaigners have described the social care provided to disabled children in England as outdated, fragmented and no longer fit for purpose.

10/09/2026

🎉 OUR 30TH ANNIVERSARY PIN BADGES ARE HERE! 💙⁠
⁠
To celebrate 30 years of the ED Society, we are happy to announce we have⁠
created a special 30th Anniversary commemorative badge – a little
keepsake to mark this very special milestone.⁠
⁠
💙 WHO WILL YOU WEAR YOUR BADGE FOR?⁠
⁠
Wear it for your child.⁠
⁠
Wear it for a family member.⁠
⁠
Wear it for a friend.⁠
⁠
Wear it for yourself.⁠
⁠
Wear it for our ED community.⁠
⁠
Your badge can be more than something you wear, and can help spark conversations.

A simple “What does your⁠ badge mean?” can be an opportunity to tell someone about Ectodermal Dysplasia, raise awareness of this rare condition and help more people understand our community.💙⁠
⁠
Want one? Order yours today – https://edsociety.co.uk/online-shop/30th-anniversary-commemorative-pin-badge/

03/09/2026

💙 PLEASE NOMINATE THE ED SOCIETY – IT ONLY TAKES A MINUTE! 💙

We have another chance to win £1,000 for the ED Society through the Benefact Group Movement for Good Awards – and we need your nominations! 🙏🏼

From 7th–11th September, 100 charities will each receive a £1,000 award, with 20 charities being drawn every day.

✨ The earlier we’re nominated, the more draws we’ll be in!

It’s completely FREE to nominate and takes just a minute. Each person can nominate the ED Society once, so every individual nomination really does count.

👉 PLEASE NOMINATE US HERE:
https://movementforgood.com/draws/1000?cn=1089135&ct=health&i=1788427292-94203.jpg&utm_source=holiday+card&utm_medium=social&utm_campaign=M4G2025card&utm_id=M4G2025card

£1,000 could make a real difference to our small charity, helping us continue providing support, information and guidance to those affected by Ectodermal Dysplasia. 💙

If you’ve already nominated us – thank you! Please share this post with friends and family and encourage them to add their nomination too.

Together, let’s give the ED Society the best possible chance! 🤞🏼

01/09/2026

This year’s ED Society Christmas Party is going to be an extra-special one, as we bring our community together to celebrate 30 years of the ED Society! 🎉

In previous years, we’ve been fortunate to receive grant funding towards the cost of our Christmas Party. Unfortunately, we haven’t been able to secure this funding for 2026, meaning this year’s event is being funded entirely by the ED Society.

As a small charity, putting on an event like this is a significant cost — but we know just how much this day means to our families. So this year, we’re asking our wonderful community for a little help. 🙏🏼

Could you, someone you know, your employer or a local business help sponsor our 30th Anniversary Christmas Party?

We have a range of sponsorship opportunities available:

🎄 £100 – Christmas Supporter
🎅🏼 £250 – Christmas Sponsor
✨ £500 – Celebration Sponsor
💙 £1,000+ – Principal Christmas Party Sponsor

Businesses can also sponsor a specific part of the day or support us with donated goods, services or prizes — from children’s gifts and activities to decorations, refreshments and more. 🎁

Every contribution will help us create a special day where children and families affected by Ectodermal Dysplasia can come together, meet others who understand and make some wonderful memories.

📩 Interested in supporting us?
Please contact [email protected] to find out more about what our sponsorship opportunities include.

And if you can’t sponsor us yourself, you can still make a difference — please share this post, tag a business or workplace that might like to get involved, or pass our details on to someone you know. 🙏🏼

Together, we can make our 30th Anniversary Christmas Party one to remember! 🎅🏼🎄

28/08/2026

Have you used or considered PGT-M through the NHS?

Researchers at the University of Sheffield are looking to hear from people who have used, or considered using, Preimplantation Genetic Testing for Monogenic Conditions (PGT-M) through the NHS.

The team is carrying out a short survey to better understand people's experiences of accessing and considering PGT-M.

Responses will help shape a grant application for a larger research project, which, if successful, would aim to develop and test better information and support for people undergoing PGT-M through the NHS.

This follows ongoing conversations around access to PGT-M. Last year, our CEO Diana took part in a PET podcast discussing the barriers people can face when accessing PGT-M, sharing perspectives from the ED community.

You can listen here: https://www.progress.org.uk/pet-podcast-preimplantation-genetic-testing-barriers-to-access/

If you have used or considered PGT-M through the NHS, your experience could provide valuable insight and help inform the next steps.

If you would like to take part, please read the participant information sheet for full details about the study, then follow the survey link below to share your experience:

https://docs.google.com/document/d/1kOy5rpNgPCi7fth2kLvl-EPo6DFg7Apr/edit

https://sheffield.questionpro.eu/a/TakeSurvey?tt=lq4YwdW2qqTWLaU0aNPNhg%3D%3D

27/08/2026

https://nfed.org/blog/my-type-of-ectodermal-dysplasia/?utm_source=NFED+eNewsletter&utm_campaign=f53b4018e7-EMAIL_CAMPAIGN_2026-5Things-7.16_COPY_01&utm_medium=email&utm_term=0_-6cb069eb09-86528833

Trying to understand all the names for all the types of ectodermal dysplasia can feel confusing. This blog breaks it down in a simple way. Learn why your syndrome may have different names, why genetic testing matters, and how knowing your gene or pathway could help with research, treatment options,....