Our Mission

The ED Society’s mission is to increase understanding and awareness of Ectodermal Dysplasias, and to ensure that everyone affected receives the information, support, and care they need to live life to the fullest.

We provide trusted guidance, practical advice, and compassionate support to individuals and families, as well as to the professionals and organisations who work with them.

We aim to:

Be the leading, trusted point of contact for accurate and accessible information on Ectodermal Dysplasias.
Offer personalised support and guidance to individuals and families affected by the condition.
Equip schools, health professionals, and social care teams with the knowledge they need to understand ED, and respond effectively.
Increase awareness of ED across the medical and wider professional communities.
Promote early recognition and diagnosis, particularly in babies and children at risk of serious symptoms such as overheating, breathing difficulties, or feeding problems.

Our Vision

A world where ectodermal dysplasia is recognised, understood, and fully supported — so every individual feels empowered and no one has to struggle to be heard.

Strategy: How we will make this happen

The work of the ED Society is guided by six strategic objectives. Together, they shape how we support individuals and families affected by Ectodermal Dysplasia, and how we work with professionals to improve understanding, care and outcomes.

1. Communication

We provide clear, accessible and reliable information about the Ectodermal Dysplasias. Our resources are written in plain language and include practical guidance to help individuals and families understand the condition and manage its effects in everyday life.

2. Database

We hold a solid and trusted database that brings together individuals, and families affected by Ectodermal Dysplasia, alongside medical professionals with experience or a specialist interest in the condition. This enables better connection, collaboration and support across our community.

3. Liaison & Support

We work closely with individuals, families, healthcare professionals and our Medical Advisory Board to offer personalised support, guidance and signposting. Our aim is to ensure that no one affected by Ectodermal Dysplasia feels isolated or unsupported.

4. Contact Network

We actively foster connections between individuals and families affected by Ectodermal Dysplasia, helping to build a supportive network where people can share experiences, practical advice and emotional support.

5. Raising Awareness

We promote greater awareness and understanding of Ectodermal Dysplasia among healthcare professionals and the wider public, helping to improve recognition, diagnosis and access to appropriate care.

6. Fundraising

We raise funds to sustain and grow the work of the ED Society, enabling us to provide vital services, specialist equipment and financial grants to individuals and families affected by Ectodermal Dysplasia.