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
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