The First World Congress on Rare Skin Diseases took place in Paris at the beginning of June 2022. The Congress was organised by the European Reference Network (ERN) for Skin and the Rare Skin Diseases Network of the Fondation René Torraine. Medical teams, scientists, patient representatives, policy makers and industry came together under one roof for three days.

The aim of the conference was to improve patient care and quality of life by bringing specialists from different expert centres and countries together to collaborate as a scientific community to share knowledge. There were sessions dedicated to epidermolysis bullosa (EB) including: EB classification and diagnosis, management of SCCs Topical gene therapy for RDEB, Clinical trials, Fibrosis in EB and Gene therapy.

The Irish delegation at the World Congress for Rare Skin Diseases: Sharon Foley and Fiona Browne from CHI @ Crumlin, Sinéad Hickey, DEBRA Ireland and Irene Lara Sáez, UCD Charles Institute of Dermatology


DEBRA Ireland was delighted to be a partner associated with this event, as meetings such as this are invaluable to progressing research into treatments and improving care for people living with EB. Not only do the experts share information but also make connections to progress research and discuss challenges with living with rare skin diseases.

Ireland was represented by members of the EB Expert medical team from [email protected], a researcher and patient representative and member of the European Patient Advocacy Group (ePAG).