Webpage Working Group (WG-WP)

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

Members
Jacqueline Woolf
The Porphyria Service, University Hospital of Wales, Cardiff, Wales, UK
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