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LIST OF PATIENT SUPPORT GROUPS

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

Belgium

Belgian website for pediatric hepatologists

http://www.md.ucl.ac.be/pedihepa/index.html

Denmark

Porphyria Association Denmark

http://porfyriforeningen.dk

 

Danish Porphyria Support Group

http://www.porfyrier.dk

Finland

Lisätietoa porfyrioista löytyy osoitteesta

http://www.helsinki.fi/project/porfyria

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

 

Association Française des malades atteints de porphyries
email contact: association.porphyries@gmail.com
http://www.porphyries-patients.org

Germany

Berliner Leberring e.V.
c/o Charité- Campus Benjamin Franklin
Hindenburgdamm 30
12203 Berlin
Tel./Fax. +49(0)30- 8322-6775
e-Mail : kontakt@berliner-leberring.de
http://www.berliner-leberring.de

 

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
http://www.sakuratomonokai.com

Nordic countries

Drug information database

http://www.drugs-porphyria.org

Norway

NPF - Norsk Porfyri Forening

http://www.porfyri.no

 

Norwegian Porphyria Centre (NAPOS)
Laboratory of Clinical Biochemistry
Haukeland University Hospital
N-5021 Bergen, Norway
Tel: +47 55 97 31 70
http://www.napos.no

Link to PubMed

PubMed (Keyword : Porphyria)

http://www.ncbi.nlm.nih.gov/PubMed

South Africa

Liver Research Centre, Department of Medicine, University of Cape Town, Cape Town, South Africa.
The website includes list of safe and unsafe drugs.


http://www.porphyria.uct.ac.za/

Spain

Asociacion espanola de porfiria
orfiria.es@gmail.com
ANDALUCIA: Mrs Rosario Fernandez
Arcangel San Rafael, 12, 6, 23
41010 Sevilla
Tel/fax: +34 95 434 00 71 - 638 47 69 98
CENTRAL: Mrs Angeles Guillamon
Irunlarrea, 7-2°C
31008 Pamplona
Tel: 616 15 38 26
http://www.porfiria.org

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, University Hospital of Wales, Heath Park, Cardiff, CF14 4XW, United Kingdom,

Mike.Badminton@wales.nhs.uk

Biochemistry Laboratory :Tel.: 44 (0) 29 20743565 Fax: 44 (0) 29 20748383
DNA Laboratory Tel.: 44 (0)29 20742811 Fax: 44 (0) 29 20748383
Welsh Medicines Information Centre :Tel: 44 (0) 29 20743877 Fax: 44 (0) 29 20743879

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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