National Association Against Porphyria – Swedish Patients Association

National Health and Welfare Board knowledge database: Erythropoietic protoporphyria (EPP). Swedish site with information about EPP disease. Prepared by SmågruppsCentrum, which is the national information center for unusual diseases and syndromes in Sweden.

National Board of Health and Welfare knowledge database: Acute intermittent porphyria (AIP). Swedish site with information about AIP disease. Prepared by SmågruppsCentrum.

Porphyriforeningen.dk – Danish Patients Association

British Porphyria Association – Patient organizations in the United Kingdom

American Porphyria Foundation – American Patients Organization

Porphyria Association Inc. – Australian Patients Organisation

Association Française des Malades atteints de porphyries – French patient organization

Association española de porfiria – Spanish patient organization

Berliner Leberring eV – German patient organization

Rare Connection – European online forum for patients with rare diagnoses, including porphyria. Available in English, German, French and Spanish.

Orphanage – European website with a focus on rare diseases and medicines for people with rare diseases.

Eurordis, Ris a European Disease – Alliances of more than 1000 patient organization for a rare diagnosis in Europe. They work to ensure that all people with rare diagnoses can live long and good lives in an inclusive society.

Center for foreign expertise in the field of porphyria

Swedish Porphyricentrum – Center for inherited metabolic diseases – Swedish Competence Center

European Porphyria Network (EPNET) – a network of European porphyria centers offering testing and clinical advice for all porphyrias

Porfiria Services Cardiff – Porphyry Center in Great Britain

British Association of Dermatologists (BAD) – a group of dermatologists treating porphyria in the UK

Porphyria Consortium – a collection of the five largest porphyry centers in the US

Center Francais des Porphyries – French porphyry center

University of Cape Town Porphyria Services – Porphyry Center in South Africa