“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...
