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.
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.
- Liaise with medical professionals for assistance and advice on you or your child’s care.
- Discuss genetics with you or your adult children to help informed decisions to be made.
Your support makes a real difference! Donate today to help us empower every journey and shape brighter futures.
Coming Up
ED Awareness Month – February 2025
February is recognised globally as ED awareness month, a time where we can all come together to shine a light on Ectodermal Dysplasia (ED), and we need YOU to help make this the most impactful month yet.
Every year, we see incredible support from our ED community, who help spread the word, raise much needed funds, and share stories of hope. It’s entirely up to you how you show your support, but we need even more voices, more actions, and more awareness this time around.
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.