Cutaneous Porphyria Working Group (WG-CP)

Chair
Michael Badminton
University Hospital of Wales, Cardiff

Members
Paula Aguilera
Hospital Clínic de Barcelona, Spain
Jasmin Barman
Triemli City Hospital, Zurich Switzerland
Janneke Langendonk
Erasmus MC, University Medical Center Rotterdam, The Netherlands
Staffan Wahlin
Karolinska University Hospital, Stockholm, Sweden
Paul Wilson
Erasmus MC, University Medical Center Rotterdam, The Netherlands
Liesel Griffin
(corresponding member)
Salford Royal Hospital, Manchester, UK

Key objectives:

  • Develop consensus information on diagnosis, treatment and monitoring of cutaneous porphyrias for clinicians
  • Develop consensus information on individual cutaneous porphyrias for patients
  • Facilitate and widen access to specialist clinical porphyria services
  • Disseminate knowledge through publications, lectures, teaching and the EPNET website

Current projects:

  • Revision of patient information leaflets
  • Updating and expanding information for professionals on the EPNET website