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...
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...
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 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...
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...
