ED Awareness Month 2026
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,...
ED Society Patron Fran Jones follows up her career-best win by battling through to ASB Classic quarter-finals in Auckland
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....
Highlights from the 9th International Conference for Ectodermal Dysplasia, June 2025.
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 Birmingham. The event brought together families affected by ED, clinicians,...
The Yearly ED-Lines 2025
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
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 Support Network for Ectodermal Dysplasia Patients
A dedicated NHS Rare Disease Collaborative Network (RDCN) for Ectodermal Dysplasia has been established, bringing together national experts to improve coordinated care, support earlier diagnosis, and enable virtual MDT discussions.
The Student Voice Prize – Beacon for Rare Diseases
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 never...
Rare diseases: we need to think about climate change too
CEO and Founder Diana Featured in The Lancet Neurology We are excited to share that our CEO and Founder, Diana, has been featured in the September issue of The Lancet Neurology. Diana appears alongside other leading professionals in the field for their contributions...
Thank you BAD
Thank You BADExciting 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 and...
xlhed-clinical-trials-uk
XLHED Clinical Trials in the UK We are super excited to announce that the clinical site for the EDELIFE XLHED trial is open in Cardiff. WE NEED YOU! Like all clinical trials, the study needs to have enough participants to evaluatethe potential treatment before it can...