ED Awareness Month February 2026 Every February, our community comes together for ED Awareness Month — a time to raise awareness of the ectodermal dysplasias, share lived experiences, and remind everyone affected by ED that they are not alone. Throughout the month,...
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 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...
