Porphyria Organisations
Take Me to:
National Porphyria Patient Organisations
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Instagram @fundacionporfiria.arg
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EPP Austria
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British Porphyria Association
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Asociación Latinoamericana para las Porfirias
Website: https://asolpor.org/
Instagram: @asolpor
Fundación para las Porfiria
Website: https://fundapor.org/
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Association Française des Malades Atteints de Porphyries
Website: porphyries-patients.org
Phone: + 33 6 13 80 92 5
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Selbsthilfe EPP e.V
For EPP and XLP
Website: epp-deutschland.de
Berliner Leberring e.V.
For acute hepatic porphyrias
Website: berliner-leberring.de
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Sociedad Mexicana Para Porfiria
Website: smporfiria.org.mx
Email: sociedadmexicanaporfiria@gmail.com
Phone: 255 55703316
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Polska Grupa Chorych na Porfirę
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National Association of Porphyrias Serbia
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American Porphyria Foundation
United Porphyrias Association
Website: porphyria.org
Phone: 1-800-868-1292
Address:
Suite 200, 4800 Hampden Lane Bethesda, MD 20814
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If your country is not listed, please contact us at admin@gpac-porphyria.orgfor immediate support.
Expert Networks
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International Porphyria Network
Find the closest Porphyria Centre, guidance on the diagnosis and management of porphyrias, and diagnostic and treatment support for countries without a diagnostic centre.
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American Porphyrias Expert Collaborative
Facilitate best practices in the diagnosis, management and treatment of the eight major porphyrias and their variants by facilitating, and coordinating expert activities in the United States. Provides support to clinicians in North, Central and South America.
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British and Ireland Porphyria Network
Support, training and best practice guidelines for clinicians in Britain and Ireland.
Drug Safety Databases
PorphyriaDrugs.com
Available as an app for your phone. Includes the NAPOS and APF databases.
NAPOS Database
Available in English, Spanish, French, Swedish and Norwegian. Database of the The Norwegian Porphyria Centre (NAPOS).