CUTIS LAXA PATIENT JOURNEYS

We have developped 2 patient journeys based on testimonies from our members on what it is like to live with a Cutis Laxa. Those documents aim to be a tool for health care professionals and patients during a consultation to help them agree on the best possible care on a long term basis. They will […]

RARE SKIN DISORDERS AND COVID-19 : An observationnal study

RARE SKIN DISORDERS AND COVID-19 An observational study was initiated by the European Reference Network ERN-Skin and the French Health Network for Rare Skin Disorders (FIMARAD) : « COVID-19 and rare skin diseases. European observational study (data research) during an epidemic”. It concerns paediatric and adult patients with rare skin diseases and suspected or confirmed […]