Welcome to the ED Society
We are a dedicated UK charity committed to supporting families and individuals affected by the rare genetic condition, Ectodermal Dysplasia (ED). Our mission is to raise awareness, provide comprehensive support and advice, and connect you with leading medical professionals.
We understand the unique challenges faced by those living with ED, and we are here to help. Whether you need guidance on day-to-day management, educational resources, or assistance in liaising with schools to ensure your children receive the proper care and attention they need, we are by your side every step of the way.
Together, we can increase understanding, continue building our supportive community, and improve the quality of life for everyone affected by ED.
Join us in our journey to empower and uplift those living with Ectodermal Dysplasia.
Do something amazing today
The ED Society is the only charity in the UK dedicated to supporting families and individuals affected by Ectodermal Dysplasia (ED). As a small non-profit, we rely on the generosity of our community to continue our vital work.
Your donations help us:
- Provide expert advice and support to those living with ED
- Raise awareness and understanding of this rare genetic condition
- Liaise with medical professionals, schools and local authorities to ensure the best care for ED children
Every contribution, whether one-off or monthly, makes a significant difference.
Please consider donating today to help us continue empowering every journey and shaping brighter futures.
The ED Society Christmas Party
Mark your calendars for Saturday, 7th December 2024, as we come together at the beautiful Hatherley Manor in Cheltenham for our ED Christmas Party, a day filled with festive cheer, friendship, and fun.
This event is the highlight of our year and more than just a party—it’s about bringing our ED community together. Your children will feel comfortable, confident, and most importantly, part of a supportive family.
When: 10th-12th June 2025
Where: Austin Court, Birmingham, UK
Our ICED25 conference will highlight excellence within the rare conditions field, and prompt discussion, reflection, and action.
World-class speakers have accepted an invitation to present their research, including updates on the first recombinant protein therapy being developed for patients with XLHED.
The third day of the conference is our Family Day, tailored exclusively for individuals and parents, providing a unique chance to delve deeper into the world of ED with the medical professionals in attendance.
NOW ENROLLING
A clinical trial is underway to explore a new treatment for XLHED and recruitment is NOW available in 8 sites in six countries – the UK, Germany, France, Italy, Spain and the USA.
Women who know or suspect that they are XLHED carriers and who are pregnant with a boy are invited to consider participating in the study.
What is ED?
Ectodermal Dysplasia is not a single disorder, but a group of closely related disorders known as the Ectodermal Dysplasias.
The ectodermal dysplasias are genetic disorders affecting the development or function of the teeth, hair, nails, and sweat glands.
Types
More than 180+ Ectodermal Dysplasia syndromes have been identified and named based on the specific combination of symptoms shown in affected individuals.
IP is characterised by abnormalities of the skin, hair, teeth, eyes, nails and may be linked with neurological problems.
Symptoms
A Geneticist, Dermatologist or Dentist may diagnose an Ectodermal Dysplasia based on abnormalities in the hair, nails, skin, sweat glands and teeth.
Genetics
DNA (Deoxyribose Nucleic Acid) is our genetic information and contains all the instructions to make a human and for our bodies to function correctly.