The Ectodermal Dysplasia Society

14/08/2026

WHY ATTEND OUR CHRISTMAS PARTY? 🎄

Our annual ED Society Christmas Party is one of the most special days in our calendar — but it is about so much more than Christmas.

Living with a rare condition like Ectodermal Dysplasia can sometimes feel isolating. Some children may never have met another person with ED, while parents can go years without meeting another family who truly understands.

Our Christmas Party changes that. 💙

Families are surrounded by people who get it. Children can meet others just like them, parents can share experiences, friendships are formed and everyone can simply enjoy being part of a community where they belong.

For one day, they aren't the only one. 💙

Never been before? We would love you to join us.

🔗 Read more here - https://edsociety.co.uk/why-our-christmas-party-means-so-much/

07/08/2026

🎉THE ED SOCIETY IS TURNING 30!🎉

This October, the ED Society celebrates 30 years of supporting people and families affected by Ectodermal Dysplasia. And today we're proud to unveil our official 30 Years celebratory logo.

But this milestone isn't just about us—it's about every one of you. 💙

Whether you've been with us from the very beginning or have only recently discovered the ED Society, you've helped shape the community we are today.

Over the coming months, we'll be celebrating our 30th anniversary by:
✨ Looking back at our journey and how far we've come
📸 Sharing memories, milestones and photos from the past 30 years
💙 Celebrating the incredible people who make our community so special
🔬 Highlighting the progress we've made together in awareness, support and research
🎉 Looking ahead to the future and the next chapter of the ED Society.

We would love you to be part of our celebrations, and we have one question for our community………

What does the ED Society mean to you?

Perhaps we've supported you through a diagnosis, helped your child at school, introduced you to lifelong friends, answered a difficult question, or simply reminded you that you're not alone.

To get involved, please send us a message, or email [email protected]. Every memory—big or small—helps us tell the story of the last 30 years.

Thank you for being part of our journey and here's to celebrating together—and to the next 30 years. 🥳💙

04/08/2026

We're pleased to share this update from our friends at the NFED about the Edelife Clinical Trial, an international research study evaluating the first potential prenatal treatment for X-linked Hypohidrotic Ectodermal Dysplasia (XLHED) in baby boys.🙏

Early results have been incredibly encouraging, with boys who received the treatment before birth now able to sweat.🤩

The ED Society is proud to be involved in this important research by helping to raise awareness of the trial here in the UK and connecting eligible families with the research team.

A UK trial site is currently based in Cardiff, and if you or someone you know is affected by XLHED and may be planning a family, we'd love to hear from you.

If you'd like more information about the study, have any questions, or would like to find out whether you may be eligible, please get in touch with us.😀

Please take a look at the EDELIFE website - https://edelifeclinicaltrial.com/

Together, we hope research like this will continue to transform the future for families affected by Ectodermal Dysplasia. 💙

Jack is a shining hope for a future XLHED treatment! 🌟

He is one of the many participants in the groundbreaking Edelife Clinical Trial for XLHED treatment, offering hope that Jack might develop the sweat glands that his grandfather—and generations before him—never had.

If you or someone you love is affected by XLHED and planning to have children, this FREE research study may be a treatment option for your child.

The Edelife Clinical Trial is evaluating the first potential prenatal treatment for XLHED in baby boys. In an earlier study, boys who received the treatment in-utero are now able to sweat, something many people with XLHED have never been able to do. All treatment and travel costs are covered.

Learn more about the study and see if you or someone you know may qualify at www.nfed.org/edelife

31/07/2026

2,877 excess deaths linked to this year's May and June heatwaves is a sobering reminder that hot weather can have devastating consequences.

For many people living with Ectodermal Dysplasia (ED), heat presents an even greater risk. Because many people with ED have reduced or absent sweat glands, their bodies cannot cool themselves effectively, meaning they can overheat rapidly. Without prompt recognition and cooling, this can quickly become life-threatening.

Throughout the summer, we've been sharing advice on staying safe in the heat, recognising the warning signs of overheating, and raising awareness of the very real risks faced by people living with this little-known rare genetic condition. Reports like this reinforce exactly why those conversations matter.

Greater awareness can lead to earlier recognition, faster action, and ultimately help save lives. We hope findings like these help ensure that nobody living with ED is overlooked during periods of hot weather. 💙

👉 https://edsociety.co.uk/support/temperature-control/hidden-heat-risks-why-hot-weather-can-be-dangerous-for-people-with-ectodermal-dysplasia/

31/07/2026

https://www.youtube.com/watch?v=jTR5Z3Izsz4

Enjoy the videos and music you love, upload original content, and share it all with friends, family, and the world on YouTube.

24/07/2026

🎥 WOULD YOU JOIN AN ED SOCIETY WEBINAR?

We're exploring the idea of launching a series of free online webinars for our ED community, and we'd love to hear what you think!

The aim would be to bring together expert advice, practical guidance and lived experience to help answer your questions and support you in everyday life with Ectodermal Dysplasia.

Some ideas we've been thinking about include:
🦷 Dental care
🌡️ Temperature regulation
🏫 School and education support
💙 Mental health and emotional wellbeing
🧬 Understanding genetics and inheritance

But we want to know what YOU would find most helpful.

💙 Would you be interested in live webinars?
💙 What topics would you like us to cover?
💙 Is there a speaker or professional you'd love us to invite?

Let us know in the comments 👇🏼

Your feedback will help us shape these sessions, so they provide the information and support that matters most to our community.🙏🏼

17/07/2026

❄️ TOP COOLING TIPS FROM THE ED COMMUNITY 💙

When it comes to managing hot weather, no one understands it better than those living with Ectodermal Dysplasia every day.

Over the years, our amazing ED community has shared countless practical tips and clever cooling hacks that have helped themselves and others stay safe when temperatures rise.

We've brought together some of those ideas —and we hope they'll help you too.

💬 Now it's your turn! What are your go-to cooling tips? Whether it's a product you swear by, a simple trick, or something you've discovered through experience, we'd love to hear it.

Share your favourites in the comments below ⬇️ Your tip could make a real difference to another family.

12/07/2026

With the hot weather continuing, we're curious to know...

💙 What's in your cooling kit?

Whether you're heading out for the day, travelling, or simply trying to stay comfortable at home, what has become your go-to for keeping cool?

Every person living with Ectodermal Dysplasia is different, and the tips and tricks shared within our community are often some of the most helpful.

Let's help each other stay safe this summer. ☀️❄️

10/07/2026

🚨 THE HEAT ISN'T OVER YET – PLEASE CONTINUE TO TAKE CARE ☀️

With the hot weather continuing across much of the UK, we'd like to remind everyone in our ED community to stay vigilant and look out for the signs of overheating.🥵

For children and adults with Ectodermal Dysplasia, overheating doesn't always look the way people expect. The early signs can easily be mistaken for tiredness, frustration, illness, or simply having an "off day".

Recognising these warning signs early and acting quickly can help prevent a situation from becoming more serious.

💧 Keep cool where you can, stay hydrated, and don't be afraid to adjust your plans if the temperatures become too much.
⚠️ If symptoms do not improve quickly with cooling measures, please seek medical advice. Suspected heatstroke should always be treated as a medical emergency.

Please take a moment to familiarise yourself with the warning signs below, and consider sharing this post to help raise awareness of the hidden risks of overheating in people living with Ectodermal Dysplasia.🙏🏼

For more guidance, head over to the cooling section on our website👇🏼
https://edsociety.co.uk/support/temperature-control/