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
Every contribution, whether one-off or monthly, makes a significant difference. Funds raised helps the ED Society to be able to thrive and succeed in helping our ED families.
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.
- Write individual letters and personal reports for doctors, schools, local authorities.
- Assist by writing appeal letters for Disability Living Allowance, Personal Independent Payment, and Blue Badge.
- Liaise with dentists or provide you with information to ensure you are not continually made to wait until your child is older before any treatment is carried out.
- Discuss genetics with you or your adult children to help informed decisions to be made.
Donate today to help us empower every journey and shape brighter futures.
What’s Happening?
ED Society Christmas Party 2025
The countdown to Christmas has begun — and we can’t wait to celebrate with you at our much-loved ED Society Christmas Party!
- Saturday 6th December 2025, 11am – 4pm
- Hatherley Manor Hotel & Spa, Cheltenham
This is the highlight of our calendar — a magical day full of connection, laughter, and festive cheer.
New Visible Difference Parenting Toolkit
The Visible Difference Parenting Toolkit is a self-guided e-book designed to support parents and carers of children with visible differences.
The toolkit is based on years of research with parents and professionals, including work by one of our Medical Advisory Board members, Maia Thornton, PhD, with input from our CEO, Diana Perry.
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.