International organisations
Global Porphyria Advocacy Coalition (GPAC)
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. Find out more at www.gpac-porphyria.org.
Browse GPAC’s #MyPorphyria campaign videos, which highlight the realities of living with porphyria through interviews with patients from around the world.
International Porphyria Network (IPNET)
The International Porphyria Network (IPNET) aims to 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.
With members including around 40 specialist centres from around the world, focus points include providing porphyria information and support to patients and medical professionals (in their own language), developing consensus guidelines and using external quality assessments to develop quality standards for clinical and diagnostic advice. Dissemination of drug safety advice is also a priority.
Find out more at www.porphyrianet.org.
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 United Porphyrias Association is at www.porphyria.org
The Australian Porphyria Association is at www.porphyria-australia.org
The following sites have websites 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