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 ED Christmas Party 2025 We’re so excited to announce that our Annual ED Christmas Party is back — and we’d love you to join us! 📅 Date: Saturday 6th December 2025, 11am – 4pm📍 Venue: Hatherley Manor Hotel & Spa, Cheltenham This is our favourite event of the...
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’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...
