2018 Announcements


19 March 2018

CLINUVEL PHARMACEUTICALS LTD today announced the results of the third European meeting on erythropoietic protoporphyria (EPP) held in Vienna, Austria, on Friday 16 March.

Physicians and medical staff from 12 countries and 21 European EPP expert centres discussed the ongoing treatment of adult patients diagnosed with EPP, the post-authorisation obligation for collection of pseudonymised data (patients’ identifying details are coded), and the clinical relevance of the treatment with SCENESSE® (afamelanotide 16mg):

  • Expert porphyria physicians and medical staff from 12 European countries were represented
  • First PASS1 analyses: 13 months of data from adult EPP patients receiving SCENESSE® collected through the European EPP Disease Registry
  • Unchanged safety profile of SCENESSE® as per SmPC²
  • Clinical effectiveness: continuation on treatment by 99% of patients
  • 61% of patients were treatment naïve (no previous exposure to afamelanotide)
  • Over 16% of patients requested start of treatment in autumn and winter months
  • Positive evaluation by physicians and patients on therapeutic benefit
  • Requests for an afamelanotide formulation for the paediatric EPP population

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