International organisations
The Global Porphyria Advocacy Coalition (GPAC) is an umbrella organization for national porphyria patient advocacy organizations, representing all types of porphyria.
GPAC works together to increase awareness and gain access to diagnosis, management and treatment of the porphyrias for all individuals impacted by porphyria.
The following patient organisations have websites in English:
The American Porphyria Foundation has an extensive website, including a section for medical staff: www.porphyriafoundation.com
The Australian Porphyria Association is at www.porphyria-australia.org
The following sites have web in their own language:
Swedish Porphyria Association: home.swipnet.se/rmp
Norway: Norsk Porfyriforening: www.porfyri.no
Porphyria Association Denmark: www.porfyriforeningen.dk
Italian Porphyria Association: www.amapo.it
Dutch EPP Foundation: www.epp.info
EPP Germany (who also cover other types of porphyria) www.epp-deutschland.de
Porphyria Association of Poland: www.porfiria.pl
France: Association Française des Malades Atteints de Porphyries: www.porphyries-patients.org
Spain: Asociación Española de Porfiria: www.porfiria.org
Porphyria information in another language
Epnet has lots of information on the porphyrias in a number of different languages: Dutch, German, French, Portuguese, Italian, Polish, Turkish, Swedish, Finnish, Norwegian and Slovenian, amongst others.
It is a great source of information for anyone travelling. It provides useful information on the testing laboratories and porphyria centres around the world, and is an ideal reference point for medical professionals as well as patients.