Penelope Stein
King’s College Hospital, London, UK
Members
Manisha Balwani
Icahn School of Medicine and Mount Sinai, New York, USA
David Cassiman
University Hospital Leuven, Belgium
Elizabeth Gill
British Porphyria Association, UK
Eliane Sardh
Karolinska University Hospital, Stockholm, Sweden
Paolo Ventura
Università degli Studi di Modena e Reggio Emilia, Italy
Paul Wilson
Erasmus MC Medical Center, Rotterdam, The Netherlands
Corresponding members
Michael Badminton
Cardiff - United Kingdom
Pauline Harper
Karolinska University Hospital, Stockholm, Sweden
Matteo Marcacci
Università degli Studi di Modena e Reggio Emilia, Italy
Wouter Meersseman
University Hospital Leuven, Belgium
Hetanshi Naik
Icahn School of Medicine and Mount Sinai, New York, USA
Key objectives:
- Develop consensus information on diagnosis, treatment and monitoring of acute porphyrias for clinicians
- Develop consensus information on acute porphyrias for patients
- Facilitate and widen access to specialist clinical porphyria services
- Enhance knowledge sharing and development capacities between porphyria laboratories
- Disseminate knowledge through publications, lectures, teaching and the Ipnet website