Medical

We are committed to bringing about better health care for individuals who have an Ectodermal Dysplasia syndrome with on-going medical research.

To do this

we are bringing awareness to more medical professionals than ever before,
providing more information about Ectodermal Dysplasia to our families,
maintaining a UK dental network,
creating care pathways,
supporting research.

We are supported by an eminent Medical Advisory Board who provide their time voluntarily.

Medical research into the Ectodermal Dysplasias continues all the time to help the lives of people who are affected by an Ectodermal Dysplasia syndrome and whilst there is no cure, research is being carried out into correcting the symptoms in X-Linked Hypohidrotic Ectodermal Dysplasia neonatal boys.

Whilst we do not have a multi-disciplinary clinic in the UK, our Medical Advisory Board are able to recommend professionals who have experience and understanding of Ectodermal Dysplasia.

For more information please contact the Society on 01242 261332 or email us.

Full summary from our International ED Conference in Birmingham.

In June 2025, the ED Society hosted the 9th International Conference for Ectodermal Dysplasia (ICED25) at Austin Court in Birmingham. The event brought together families affected by ED, clinicians, researchers, and international support groups from more than 20 countries.

Because ectodermal dysplasia is such a rare condition, opportunities for families and professionals to meet are limited. ICED25 provided a unique space to share knowledge, build connections, and strengthen collaboration across borders and disciplines.

We’re pleased to share the full conference summary, which captures the key themes, presentations, and discussions from across all three days — including the dedicated Family Day, where families connected directly with experts and one another.

Read the ICED25 Conference Summary →

New NHS Rare Disease Collaborative Network for Ectodermal Dysplasia

We’re pleased to announce the launch of a dedicated NHS Rare Disease Collaborative Network (RDCN) for individuals with Ectodermal Dysplasia (ED) and related conditions.

This exciting development was officially announced at ICED25 in June. The ED RDCN becomes the 28th such network established by NHS England to improve care for people with rare diseases across various specialties.

Accessing care for Ectodermal Dysplasia has historically been challenging due to the complex and fragmented nature of specialist services. To help address this, an application was submitted to NHS England to create a dedicated RDCN — and we’re delighted to share that it was approved in February 2025.

The ED RDCN brings together leading experts from across the UK who are committed to improving patient care, advancing research, and increasing understanding of Ectodermal Dysplasia.

As part of this network, individuals with a known or suspected diagnosis of ED can now be discussed virtually by a national, multi-disciplinary team of specialists. This enables expert advice and care planning to be shared with your local clinician — without the need for additional travel or appointments.

If your doctor or specialist would like more information about accessing this support, please ask them to contact the ED Society, via email diana@edsociety.co.uk, who will be happy to connect them with the RDCN team.

“The ED Rare Disease Collaborative Network thanks the ED Society for their ongoing support.”

Can you recommend a Doctor or Specialist?

We love to hear positive stories about any help and support you receive from a GP or specialist.

But sadly, many professionals have never heard of Ectodermal Dysplasia and this puts a huge amount of stress and frustration on our ED families.

We have been fortunate enough to acquire an extensive professionals list over the years to help you, and have a knowledgeable, supportive, Medical Advisory Board.

The Medical Advisory Board give their time voluntarily, for which the ED Society is most grateful. They assist us in helping to find medical professionals close to your home who have an understanding of Ectodermal Dysplasia. We are very lucky to be in close liaison with them to help answer the many questions raised.

But, we still want to make this better –

Maybe you can tell us a great dentist, dermatologist, geneticist, opthalmologist etc. you have visited and have received the support and treatment you needed?

We would really appreciate if you could answer the questions below or simply email us any information you have – info@edsociety.co.uk. We can then update our professionals list which we use to support our ED community.