The Ectodermal Dysplasia Society

12/06/2026

⚽🌍 THE FIFA WORLD CUP 2026 IS HERE — AND WE'D LOVE YOU TO GET INVOLVED! 🌍⚽

Football fever has officially kicked off, and this year you can turn your World Cup celebrations into support for Ectodermal Dysplasia and the ED Society. 💙

Whether you're at home, at work, with friends or at your local club, there are lots of fun ways to raise funds while enjoying the tournament:

⚽ Run a World Cup sweepstake
👕 Hold a Football Shirt Day
🧠 Host a football quiz night
🎁 Organise a raffle
🏆 Challenge friends, family or colleagues to predict the winners

Every pound raised helps us continue providing support, information, guidance and a vital community for individuals and families affected by Ectodermal Dysplasia.

We've created some free World Cup fundraising resources to help you get started.

📩 If you're planning a World Cup fundraiser, please get in touch — we'd love to hear what you're organising and see your photos throughout the tournament!

Thank you for supporting Team ED. 💙⚽

11/06/2026

🐾💙 Meet Waffle — Ezra's four-legged guardian.

When the Jones family adopted a rescue dog, they never imagined just how much she would change their lives.

For Ezra, who lives with ectodermal dysplasia, daily life can bring challenges that many people never see. But from the moment Waffle arrived, there was something special about the bond they shared.

What began as the adoption of a rescue dog quickly became something much more.

Today, Waffle is much more than a family pet. 💙

You can read more about Ezra and Waffle's inspiring story on our website👇🏻
https://edsociety.co.uk/support/ed-community-stories/waffle-and-ezra-more-than-just-a-dog/

30/05/2026

💙 We would like to extend our heartfelt thanks to little Jacub and his family, who kindly chose to support the ED Society through a collection held in memory of his beloved "Omi".

At such an incredibly heartbreaking time for the family, we were deeply touched that they thought of the ED Society and our community. Through the collection, an amazing £350 was raised, and we are truly grateful for their kindness, generosity and support.

Our thoughts, love and deepest condolences are with Jacub and his family. Thank you for thinking of us during such a difficult time and for honouring her memory in such a thoughtful way. 💙

29/05/2026

🎄✨ EARLY BIRD TICKETS NOW AVAILABLE ✨🎄

Our ED Society Christmas Party is back for 2026 — and for a limited time, adult tickets are available at our special Early Bird price of just £23

👧 Children & siblings attend FREE
📅 Early Bird offer available until 30th June 2026

Booking early really helps us plan ahead and confirm entertainment, activities and festive surprises for everyone attending.

Last year we came incredibly close to having to cancel due to low numbers, so this year we are hoping our amazing ED community can come together and make 2026 our biggest and best celebration yet 💙

Whether you are returning to see familiar faces or thinking about attending for the very first time, we would absolutely love to welcome you.

🎟️ Secure your tickets early and help us make this year’s Christmas Party truly magical.

👉🏻 https://edsociety.co.uk/event/ed-christmas-party-2026/

20/05/2026

🎄✨ THE ED SOCIETY CHRISTMAS PARTY IS BACK FOR 2026 ✨🎄

Save the date — Saturday 5th December 2026 💙

We are so excited to announce that planning is already well underway for this year’s ED Society Christmas Party, returning once again to the beautiful Hatherley Manor Hotel in the heart of the picturesque Cotswolds countryside.

We honestly cannot wait to see our incredible ED community together again — familiar faces, old friends, and we would especially love to welcome as many new families and individuals as possible this year 🙏🏻

For so many families, this event is far more than just a Christmas party. It is a chance to meet others who truly understand, build friendships, feel supported, and make memories together in a safe and welcoming environment.🥰

Last year we came incredibly close to having to cancel due to low numbers, so we are really hoping 2026 will be our biggest and best celebration yet. We would love to see everyone come together and make this year extra special 🎄

🎟️ Tickets go on sale this Friday — and the earlier tickets are purchased, the sooner we can confirm bigger plans, activities and arrangements for everyone attending. Early support really does make a huge difference.

Above all, we want our Christmas Party to be a place where everyone feels welcome. If finances are worrying you but you would really love to attend, please reach out to us privately. We would never want someone to miss out on being part of our ED community and are always happy to discuss ways we may be able to help.

Let’s make this year one BIG ED community celebration🥳

👉🏻https://edsociety.co.uk/event/ed-christmas-party-2026/

19/05/2026

💙 Please Nominate The ED Society 💙

We are asking our wonderful ED community to support us by nominating The ED Society for a £5,000 Movement for Good Award.

As a small charity supporting individuals and families affected by ectodermal dysplasia, funding like this can make a huge difference. It helps us continue providing support, guidance, awareness, resources, family events, and a vital community for those living with ED.

✨ Nominations close at midnight on Sunday 24th May, so time is running out.

If the ED Society has helped you, your family, or someone you know, we would be incredibly grateful if you could take a moment to nominate us.💙

👉🏻https://movementforgood.com/draws/special/health-wellbeing?cn=1089135&ct=health&i=1779190229-40601.jpg&utm_source=holiday+card&utm_medium=social&utm_campaign=M4G2025card&utm_id=M4G2025card

13/05/2026

Good luck to all the amazing young people in our ED community taking on their GCSE exams this week ✨

We know exam season can bring extra challenges for those living with ectodermal dysplasia — especially as warmer weather approaches. Overheating, fatigue, concentration difficulties and temperature regulation can all have a huge impact during long exam days.

Please remember, support and adjustments can be put in place to help make exams safer and more manageable. 💙

Our website includes information and guidance around:
💧 Keeping cool during exams
🧊 Temperature regulation support
📝 Exam access arrangements and school support
🏫 Education Health Care Plans (EHCPs)
👨‍👩‍👧 Supporting children and young people with ED in education

Wishing every student the very best of luck — you’ve got this! 🌟

You can read more and access support here 👇
https://edsociety.co.uk/support/education/keeping-cool-in-exams/

11/05/2026

This week, Diana and Danielle are attending the Royal College of Paediatrics and Child Health (RCPCH) Conference in Birmingham on behalf of the ED Society.

Being here is a really valuable opportunity for us to raise awareness of ectodermal dysplasia, share information about the condition, and connect with paediatricians, healthcare professionals, and attendees from across the world throughout the conference.

As a small non-profit charity, opportunities like this make a huge difference in helping us ensure ectodermal dysplasia is better understood and recognised within healthcare settings.

We’d also like to say a heartfelt thank you to the British Association of Dermatologists (BAD) for generously funding our PSG stand this week. Without their support, attending this event simply wouldn’t have been possible for us.🙏

11/05/2026

A huge thank you to our incredible supporters who raise free funds for us through 💙

We know we mention it a lot, but if you haven’t signed up yet, now’s the perfect time! Every time you shop online, you can raise FREE donations for the ED Society at no extra cost to you.

Big brands including TUI, John Lewis & Partners, Argos, Just Eat and thousands more will donate a percentage of what you spend — completely free.

Sign up today and not only will you help support our work, but we could also be in with a chance of winning an extra £5,000 donation!

One click for you could make a huge difference for us 🙏

Help us when you shop with 7,000+ brands. Join now.

08/05/2026

“Don’t let her continue playing tennis.”

Those were the words once given to the parents of our patron, Fran Jones, as a young child living with ectodermal dysplasia.

Today, Fran is competing on the world stage.🎾

In her recent interview with The Times, Fran speaks candidly about the reality behind elite sport — overcoming challenges linked to ED, intense training in Barcelona, injury setbacks, recovery after a serious gym accident, and the heartbreak of seeing her ranking drop.

But through it all, her passion for tennis never disappeared.💪

An inspiring and deeply honest story of resilience, determination and belief.🩵

Want to learn more about Fran and her journey with ED? Visit our website to read more 👇️

https://edsociety.co.uk/about-us/meet-the-team-2/we-welcome-up-and-coming-tennis-player-as-patron-of-the-ed-society/