The Visible Difference Parenting Toolkit is a new self-guided e-book created to support parents and carers of children with visible differences. Developed by researchers at the Centre for Appearance Research, with input from parents with lived experience and...
New NHS Rare Disease Collaborative Network for Ectodermal Dysplasia We are delighted by the establishment of a dedicated Rare Disease Collaborative Network (RDCN) for individuals with Ectodermal Dysplasia and related conditions. Approved by NHS England in February...
Thank You BAD Exciting news – we’ve been awarded a £1,000 grant from the British Association of Dermatologists (BAD) Patient Support Group Funding! This generous funding will go towards updating our printed and downloadable resources to reflect our new branding...
Become a Friend of the ED Society Our membership fees have been the bedrock of the ED Society for over 20 years. After careful consideration, we have decided to change from annual membership to monthly contributions and invite you to join us as a ‘Friend of’ the ED...
ED Society Issues Heatwave Warning for People with Ectodermal Dysplasia The ED Society has issued a press release highlighting the hidden dangers that hot weather can pose for people living with ectodermal dysplasia (ED). As temperatures rise across the UK, the...
“Don’t let her continue playing tennis.” Those were the words once given to the parents of our patron, Fran Jones, as a young child living with ectodermal dysplasia. Today, Fran is competing on the world stage. In her recent interview with The Times, Fran speaks...
This week, Diana and Danielle are attending the Royal College of Paediatrics and Child Health (RCPCH) Conference in Birmingham on behalf of the ED Society. Being here is a really valuable opportunity for us to raise awareness of ectodermal dysplasia, share information...
He did it! A huge congratulations to Calum for completing the London Marathon in an amazing time of 3:40 for #TeamED! We’ve absolutely loved seeing all the photos and the incredible atmosphere around him — what a journey it’s been. Taking on both the Brighton and...
Fran Jones follows up her career-best win by battling through to ASB Classic quarter-finals in Auckland We’re delighted to share some brilliant news about our patron Francesca Jones, who has made an outstanding start to her tournament at the ASB Classic in Auckland....
Families, clinicians, and researchers came together to share progress and hope. 10–12th June 2025 | Austin Court, Birmingham, UK In June 2025, the Ectodermal Dysplasia Society hosted the 9th International Conference for Ectodermal Dysplasia (ICED25) at Austin Court in...
The Yearly ED-Lines 2025 Our Yearly ED-Lines newsletter is here — celebrating an incredible year of progress, awareness, and community! Highlights include ICED25, which showed the true power of our community — families, and professionals uniting with compassion and...
The Student Voice Prize – Beacon for Rare Diseases The Student Voice Prize is an annual, international essay competition that raises the profile of rare diseases within the medical field, particularly with medical students, nurses and scientists who may have...
