Webpage Working Group (WG-WP)

Chair
Caroline Schmitt
French Centre of Porphyrias, Louis Mourier University Hospital, Colombes, France

Members
Antony Fearn
British Porphyria Association (BPA), UK
Emmanuel Carton
Professional webmaster, 2idfkp.net, France
Jean-Charles Deybach
French Centre of Porphyrias, Louis Mourier University Hospital, Colombes, France

Key objectives:

  • Rapidly accessible source of information for porphyria patients, families and healthcare professionals
  • Updated contact information of EPNET members
  • Access to consensus-agreed guidelines and to EPNET working group deliverables
  • Publish relevant information of clinical trials, ongoing research projects

Current projects:

  • Organization of the website and the navigation menu
  • Publication of updated contact information of porphyria centres and patient organizations that are EPNET members
  • Publication of information about the different EPNET working groups