Links

Porphyria Information Resources on the WWW

This information is not a complete list of resources. It is intended as a starting point for those interested in finding more information.

 

Porphyria consortium

Website : http://www.rarediseasesnetwork.org/porphyrias/

 

Rare connect

Website : https://www.rareconnect.org/

 

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

Website : http://www.porphyria-australia.org

 

Belgium :

Belgian website for pediatric hepatologists

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

 

Denmark :

Porphyria Association Denmark

Website : http://porfyriforeningen.dk

 

Danish Porphyria Support Group

Website : http://www.porfyrier.dk

 

Finland :

Lisätietoa porfyrioista löytyy osoitteesta

Website : 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.

Website : http://www.porphyrie.net

 

Association Française des malades atteints de porphyries
email contact: association.porphyries@gmail.com

Website : 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

Website : http://www.berliner-leberring.de

 

Selbsthilfe EPP (Erythropoetische Protoporphyrie) e. V.

Website : 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.

Website : 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

Website : http://www.sakuratomonokai.com

 

Mexico :

Porfiria México

Website : www.porfiriamexico.com

 

The Netherlands :

The Dutch EPP Association can be contacted on
secretaris@epp.info

Website : www.epp.info

 

Nordic countries :

Drug information database

Website : http://www.drugs-porphyria.org

 

Norway :

NPF - Norsk Porfyri Forening

Website : 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

Website : http://www.napos.no

 

Link to PubMed :

PubMed (Keyword : Porphyria)

Website : 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.
 

Website : 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

Website : 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

Website : 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

Website:

 

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.

Website : www.cardiff-porphyria.org

 

British Porphyria Association
Mrs Karen Harris, 14 Mollison Rise, Gravesend, Kent DA12 4QJ.
Tél.: 01474 369231. helpline@porphyria.org.uk

Website : http://www.porphyria.org.uk

 

United States of America :

American Porphyria Foundation
P.O. Box 22712, Houston, Texas 77227

Website : http://www.porphyriafoundation.com