The specific European Reference Network concerning Cutis Laxa is of course included in theglobal ERNs results. Nevertheless some particular issues need to be pointed out :

  • The first training session was held in Helsinki in 2017. The second one will soon be held in Roma. These training sessions aim to train young healthcare professionals regarding specificity, difficulties, diagnostic and car for rare dermatologic disorders.
  • Conference calls are held regularly. They bring together professionals and patient representatives to work on established aims. Regarding the sub thematic group “Mendelian Connective Tissue Disorders” (MCTD), one of our first tasks will be to update the classification of the different types of Cutis Laxa.