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 Ipnet members
- Access to consensus-agreed guidelines and to Ipnet working group deliverables
- Publish relevant information of clinical trials, ongoing research projects
- Organization of the website and the navigation menu
- Publication of updated contact information of porphyria centres and patient organizations that are Ipnet members
- Publication of information about the different Ipnet working groups