The below list is non exhaustive. If you
know of a patient support group not listed
below please
.
Australia
|
Porphyria Association Inc
The Nerve Centre, 54 Railway Road, Blackburn, VIC, 3130, Australia
Tel.: +61 (0)3 9845 2737
Fax: +61 (0)3 9845 2777
porphyria@mssociety.com.au
http://www.porphyria-australia.org
|
Canada
|
The Canadian Porphyria Foundation
porphyria@cpf-inc.ca
http://www.cpf-inc.ca
|
Denmark
|
Porphyria Association Denmark
http://porfyriforeningen.dk
|
| |
Danish Porphyria Support Group
http://www.porfyrier.dk
|
France
|
Centre Francais des Porphyries, Service de Biochimie et Génétique Moléculaire
CHU Louis Mourier, 178, Rue des Renouillers 92700 Colombes.
The website includes list of safe and unsafe drugs.
http://www.porphyrie.net
|
Germany
|
Selbsthilfe EPP (Erythropoetische Protoporphyrie) e. V.
http://www.epp-deutschland.de
|
Italy
|
Associazione Malati di Porfiria (AMAPO)
Ms S. Pavia, V. Fiume Bianco, 130,
00144 Roma, Italy.
Presidente S. Simona Pavia Sede : c/o Istituto S.Gallicano Via S. Gallicano,
25 CAP 00153 Roma, Italy.
http://www.amapo.it
|
Japan
|
Welcome to “SAKURA Friends”
Japanese porphyria patients group, “SAKURA Friends” (SAKURA means cherry blossoms) was formed in 1997 by porphyria patients, families and support volunteers. Today the group has 66 members.
The group’s activities include issuing newsletters three times a year, organizing gatherings and study meetings, providing information and encouraging communication among members in the website, etc.
The group makes efforts to:
• Enhance knowledge about porphyria
• Encourage communication among members
• Support research for early diagnosis and improvement in treatment, which ultimately lead to cure
• Contribute to improve social system and environments for patients and families
We welcome porphyria patients, families and anybody that supports the group’s aim and efforts. Welcome!!!
We are also eager to make friends outside Japan so that we can exchange information and experiences and learn from each other.
Those who read Japanese can find more information about our group at
www.sakuratomonokai.com
|
Norway
|
NPF - Norsk Porfyri Forening
http://www.porfyri.no
|
Poland
|
Stowarzyszenie Porfiria Polska
ul. Chocimska 5,
00-957 Warszawa
Poland
Tel: +48 22 646-51-09
+48 22 849-36-51 wew.222
http://www.porfiria.pl
|
Spain
|
Web Andaluza de Anestesiología, Reanimación y Terapéutica del Dolor
The Spanish Porphyria Association,
Mrs Rosario Fernandez
Arcangel San Rafael, 12, 6°, 23
41010 Sevilla
Tel/Fax : +34 95 434 00 71
http://www.anestcadiz.com
|
Sweden
|
Porfyricentrum Sverige-The Swedish Porphyria Association
Riksföreningen mot porfyrisjukdomar
Huddinge University Hospital C2 71
SE-141 86 Stockholm, Sweden.
profyri@swipnet.se
http://home.swipnet.se/rmp
|
Switzerland
|
Schweizerische Gesellschaft für erythropoietische protoporphyria
Stadtspital Triemli, Zentrallabor Birmensdorferstrasse
497 CH-8063 Zurich, Switzerland
Tel : +41 1 466 23 22 Fax : +41 1 466 27 09
|
United Kingdom
|
Cardiff Porphyria Service
Department of Medical Biochemistry and Immunology, University Hospital of Wales, Heath Park, Cardiff, CF14 4XN.
The website includes list of safe and unsafe drugs.
www.cardiff-porphyria.org
|
| |
British Porphyria Association
Mrs Karen Harris, 14 Mollison Rise, Gravesend, Kent DA12 4QJ.
Tél.: 01474 369231. helpline@porphyria.org.uk
http://www.porphyria.org.uk
|
United States of America
|
American Porphyria Foundation
P.O. Box 22712, Houston, Texas 77227
http://www.porphyriafoundation.com
|
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