Acute hepatic porphyria clinical working group

Chair
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
University Hospital of Wales, Cardiff, UK
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 EPNET website

Current projects:
We are currently developing clinical guidelines for the diagnosis, treatment and monitoring of the acute porphyrias. Our aim is to publish recommendations that provide practical, unbiased guidance for clinicians and patients all over the world based on best available evidence and consensus expert statements.