Acute Porphyria International Support working Group (WG-APIS)

Penelope Stein
King’s College Hospital, London, UK

Jordi To-Figueras
Hospital Clinic of the University of Barcelona, Spain
Antoine Poli
French center for porphyrias, Louis Mourier Hospital, Colombes, France
Eva Diehl-Wiesenecker
Charité-Universitätsmedizin Berlin, Germany
Kika Shabot
Sociedad Mexicana Para Porfiria, Mexico

To provide acute porphyria support to healthcare professionals looking after patients in countries where specialist care is not available.  Our priorities are to facilitate diagnostic laboratory testing, management advice, and better access to treatments. 

We are now able to offer support to healthcare professionals looking after patients with suspected acute porphyria in countries where porphyria laboratory testing and specialist care are not available.  This may include arranging for biological samples from your patient to be sent to a specialist porphyria laboratory in Europe or the USA for diagnostic testing without charge. The cost of sample transport will be paid for by IPNET.

The referring clinician should contact us through the IPNET website by completing this webform. Please provide anonymised patient details, reasons for suspecting acute porphyria and full contact details for yourself.  After receiving the referral, we will contact you to arrange an initial consultation by email or videocall.

Please note we are unable to accept referrals directly from patients. If you are a patient, please can we ask you to share the information above with your doctor.