Support
The ED Society is here to support individuals and families affected by Ectodermal Dysplasia in every aspect of life.
Ectodermal Dysplasia can impact people in many different ways — medically, practically, and emotionally. Whether you’re looking for help with day-to-day management, understanding a diagnosis, or navigating the challenges that come with living with ED, we’re here to help.
Support isn’t just about medical information. It also means understanding the emotional impact on individuals, parents, relatives, and friends — and providing practical guidance through every stage of life.
Our website offers a wide range of information and resources, including help with:
-
Disability Living Allowance (DLA)
-
Personal Independence Payment (PIP)
-
Education, Health and Care Plans (EHCPs)
-
The ED Society School Care Plan
…and much more.
If you can’t find what you’re looking for, or if you just want to speak with someone who truly understands what you’re going through, please don’t hesitate to get in touch. You can email us or call us on 01242 261332 — we’re always here to listen and help.
We also offer a Support Fund for UK members, designed to provide financial assistance in times of need. You’ll find full guidelines and application forms through the Support Fund section
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.