What is EPNET ?

EPNET, the European Porphyria Network, is a a non-profit learned association (or scientific association), having its office in Bergen, Norway.
EPNET will promote fundamental and clinical research in the field of porphyrias, improve knowledge of the porphyrias and facilitate best practice in their treatment and diagnosis by accommodating and interconnecting expert activities across Europe in the service of porphyria patients.

Covid-19 and Porphyria

Risk of coronavirus infection

So far, we have no evidence that porphyria disease is a risk factor in itself.
It is thought, that for the majority of people with porphyria, you will be at no greater risk of contracting Covid-19 or at any greater risk of an adverse outcome than the general population.
If you have other health complications such as lung, kidney, or liver disease and/or if you are receiving immunosuppressive therapy or chemotherapy, you might be considered to be vulnerable.
Please follow the advice provided by your own country’s Government and healthcare system, by your local expert porphyria centre and by your doctors.

Specific advice for patients with acute hepatic porphyria

• Acute Intermittent Porphyria (AIP)
• Variegate Porphyria (VP)
• Hereditary Coproporphyria (HCP)

In the event of a Covid-19 infection, and if you are affected by an acute hepatic porphyria (or if you are an asymptomatic carrier), it is essential that you receive the most appropriate treatment. Any infection can trigger an acute attack of porphyria.

Safe drugs should be selected if possible. Information on safe and unsafe drugs can be found by looking up into the drug database for acute porphyrias:

If safe alternatives are not available, it may be necessary to use unsafe drugs with proper follow-up.

Specific recommendation for patients with Porphyria Cutanea Tarda (PCT)
Patients treated with low-dose chloroquine or hydroxychloroquine should not consider that this might represent a protective measure against Covid-19. You should strictly follow the general protective measures.