ICED25 - 9th International Conference for Ectodermal Dysplasia
2025-06-10 - 2025-06-12 | Austin Court, 80 Cambridge St, Birmingham, B1 2NP, United Kingdom
Official Sponsors of ICED25

Simon Lees-Jones, ED Society UK Member
European Donor

Full Programme Now Availiable HERE
What is ICED?
In 2004, the UK hosted the ECTO4, a significant milestone as one of the initial International Conferences on ectodermal dysplasia. These conferences have since become a recurring event in Europe, taking place every three years. It is with great honour and pride that we are now announcing our role as hosts for the 9th Conference, ICED25, to be held in Birmingham on 10th – 12th June 2025.
ICED25 will highlight excellence within the rare disease field, and prompt discussion, reflection, and action. We collaborate with other Ectodermal Dysplasia organisations worldwide dedicated to improving the health and well-being of people affected by the Ectodermal Dysplasias.
“Our vision: a world in which no one faces their rare disease journey alone.”
CPD Accreditation for ICED25 – We are pleased to announce that this conference has been accredited by Continuing Professional Development (CPD).
All medical professionals in attendance will receive a Certificate of Attendance, contributing to their CPD points. This accreditation supports ongoing professional growth, enabling attendees to enhance their skills, expand their knowledge, and stay up to date with the latest research and advancements in the field.
Please join us and take advantage of this opportunity to advance your professional development, while engaging with leading experts in ectodermal dysplasia research and care.

“Our team prides itself on delivering our vision that makes everyone feel welcome and heard.”
What can you expect?
The first two days of the ICED25 Conference are for medical professionals only – World class speakers have accepted an invitation to present their research, including an update on the first recombinant protein therapy being developed for patients with the most common form of ectodermal dysplasia – XLHED.
The third day (12th June) is our “Family Day”, exclusively for individuals affected and parents, providing a unique chance to delve deeper into the world of ED with the medical professionals in attendance. (Medical Professionals are encouraged to also attend this day.)
This day will offer a valuable platform to have our families questions answered, and will feature interactive Q&A sessions covering all aspects of ectodermal dysplasia. Beyond the educational aspect, it’s also a wonderful opportunity for them to connect and build meaningful friendships with others who share their journey.
Building upon the success of previous conferences in London (2004), Copenhagen (2006), Norway (2015), Spain (2018), and Paris (2022), ICED25 will bring together paediatricians, dentists, scientists, dermatologists, ear, nose and throat specialists, geneticists, oral and maxillo-facial surgeons, ophthalmologists, experts in child development and other specialists to discuss the challenges of ectodermal dysplasia and the latest advances in research.
By working in partnership with patient organisations and professionals, we are breaking the isolation felt by those living with ectodermal dysplasia, uniting all into a single unified force.

Where to stay?
Premier Inn, City Centre, Broad Street, Birmingham.
Premier Inn, City Centre, Bridge Street, Birmingham.
Hampton by Hilton – When making a booking, use Special Rates tab and addCorporate Account number 3451905
Leonardo Royal Hotel – rooms can be booked online with a 15% discount

Useful Links
Full Programme for ICED25
ICED25 Brochure
What’s On In Birmingham
ICED25 Press Release Feb 2025
Full session and presentation list
ICED25 Invitation

Contact us to discuss the availability of Travel Grants.
We are also offering discounted tickets for Medical & Dental Students/Trainees. *Please provide placement/location details when requesting discounted tickets*
Early bird registration of £130 for Medical and Dental professionals on day one and day two, if booked before Tuesday 1st April 2025.
Please see ticket options below.

Please email any questions to diana@edsociety.co.uk

Family Day at ICED25
2025-06-12 09:00 - 16:00 UTC | Austin Court, 80 Cambridge St, Birmingham, B1 2NP, United Kingdom
We’re excited to invite you to a very special event – our Family Day at the ICED25 Conference! The full programme has now been finalised, and you can view what is happeneing HERE.
What is ICED?
ICED25 will highlight excellence within the rare disease field, and prompt discussion, reflection, and action. We collaborate with other Ectodermal Dysplasia organisations worldwide dedicated to improving the health and well-being of people affected by the Ectodermal Dysplasias.
“Our vision: a world in which no one faces their rare disease journey alone.”

What to Expect:
This day is exclusively designed for families and parents of individuals affected by ectodermal dysplasia, and offers a unique opportunity to connect with top medical professionals, get your questions answered, and be part of a supportive community.
Beyond the educational aspect, it’s also a wonderful opportunity to connect and build meaningful friendships with others who share your journey.
“Our team prides itself on delivering our vision that makes everyone feel welcome and heard.”
On the day:

Engage with Experts: The Medical Advisory Board (MAB) and invited medical specialists will be on hand to provide invaluable insights and answer all your questions about ED.
Interactive Q&A Sessions: Gain deeper understanding and perspective on ectodermal dysplasia from experts in the field.
Build Connections: Meet other families who share your journey and build meaningful relationships.
Refreshments Provided: Enjoy tea, coffee, pastries, and a buffet lunch during the day.

Event Details:

Who Can Attend: Family members aged 16 and above (please note, there are no childcare facilities available)
Cost: £30 per adult (to include refreshments, lunch, and access to all the sessions.)
Date & Time: Thursday 12th June 2025, 9am – 4pm
Location: Austin Court, 80 Cambridge St, Birmingham, B1 2NP

To make the most of the presentations, please send us any questions you have in advance. Please email Diana Perry.

Useful Links
Full Programme for Family Day
ICED25 Brochure
What’s On In Birmingham
ICED25 Press Release Feb 2025
ICED25 Invitation

ED Society Christmas Party 2026
2026-12-05 11:00 - 16:00 | Hatherley Manor Hotel and Spa, Down Hatherley Ln, Gloucester, England, GL2 9QA
Save the Date

Saturday 5th December 2026
11am – 4pm
Hatherley Manor Hotel, Cotswolds

We are delighted to announce that the ED Society Christmas Party is back for 2026.
Planning is already well underway, and we are so excited to once again bring our ED community together at the beautiful Hatherley Manor Hotel, set in the heart of the picturesque Cotswolds countryside.
One Big ED Community Celebration
Our Christmas Party is far more than just a festive event. For many families and individuals affected by ectodermal dysplasia, it is a rare and special opportunity to meet others who truly understand.
It is a chance to reconnect with familiar faces, welcome new families, build friendships, share experiences and create magical memories together in a safe, friendly and supportive environment.
After almost having to cancel last year due to very low numbers, we are really hoping 2026 will be our biggest and best celebration yet.

What to Expect
This year, we are pleased to share that:

We’ll be back in the larger event suite
There will be fantastic entertainment from Non Stop Kids Entertainment
The wonderful Mad Hattie returns with her amazing face painting
Families can capture memories together in our photo booth and take pictures home
Activities and crafts to keep you busy throughout the party – a great oppurtunity to get your letters written to Santa
Buffet lunch and refreshments included in your ticket price throughout the day
Santa will be making a return visit with gifts for the children.

Tickets
Tickets for the ED Society Christmas Party 2026 are officially on sale!
To celebrate the launch, we are offering a special Early Bird ticket price of just £23 per adult for a limited time only.
Early Bird offer available until 30th June 2026Children & siblings attend FREE
Booking early really helps us as we begin confirming entertainment, activities and festive plans for this year’s event — and your support truly makes such a difference.
Everyone Is Welcome
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 the ED community and are always happy to discuss ways we may be able to help. Please email danielle@edsociety.co.uk
Join Us
We would love to see as many families and individuals as possible at this year’s Christmas Party — familiar faces, old friends and especially those joining us for the very first time.
