Chair
Janneke Langendonk
Porphyria Center Rotterdam
Erasmus MC Rotterdam, The Netherlands
Members
Aasne Aarsand
Norwegian Porphyria Center, Haukeland University Hospital
Bergen, Norway
Anna Burgess / Alana Adams
NHS Cardiff, Wales, United Kingdom
Bruce Wang
UCSF, San Francisco, USA
Danja Schulenburg-Brand
Cardiff and Vale Health Board, NHS Wales, United Kingdom
Linda Gilleshammer
Norwegian Porphyria Center, Haukeland University Hospital
Bergen, Norway
Mark Sonderup
Groote Schuur Hospital Cape Town, South Africa
Miao Chen
Porphyria MDT Group of PUMCN, Beijing, China
Nils Wohmann
Porphyriezentrum - Klinikum Chemnitz, Germany
Richard Hift
University of KwaZulu – Natal, Durban, South Africa
Sander Borgsteede
Health Base Foundation, Houten, The Netherlands
Key objectives: The terms of Reference for the WG:
- Publish recommendations on drug use in the acute porphyrias and different natural history states.
- Provide advice on drug use for specific indications/individual patients.
- Provide an overview of different methods used to classify the safety of drugs in porphyria and their strengths and limitations.
Current projects:
- Methodology
- Paper on methodology
- Database necessities