19th February : First ERN-Skin Scientific Day
114 doctors and researchers attended. Each thematic group presented the work done on the disorders they are concerned with.
For the Heritable Connective Tissue Disorders (HCTD), a study is taking place in the Netherlands to evaluate prevalence and severity of fatigue, pain, disability and global health for children and teenagers suffering from the most common HCTD.
Other topics were presented such as interconnections between nervous system and skin system, and also innovative methodologies
8th June : ERN-Skin Executive Committee
During this meeting the agenda was very fully.
Marie-Claude Boiteux presented the epags’ work on « Patient Journeys » for each disorder concerned by ERN-Skin,
And then the Patients Satisfaction Survey, Registries,
the SPOT application,
Results of 2020
and organising, in Paris in 2022, the next Rare Skin Diseases World Congres –
these wide ranging questions showed ERN-Skin’s dynamism and how it implements concrete projects.