List of patient support groups

The below list is non exhaustive. If you know of a patient support group not listed below please contact us .


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


Belgian website for pediatric hepatologists


Porphyria Association Denmark


Danish Porphyria Support Group


Lisätietoa porfyrioista löytyy osoitteesta


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.


Association Française des malades atteints de porphyries
email contact:


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


Selbsthilfe EPP (Erythropoetische Protoporphyrie) e. V.


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.


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

Nordic countries

Drug information database


NPF - Norsk Porfyri Forening


Norwegian Porphyria Centre (NAPOS)
Laboratory of Clinical Biochemistry
Haukeland University Hospital
N-5021 Bergen, Norway
Tel: +47 55 97 31 70

Link to PubMed

PubMed (Keyword : Porphyria)

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.

Asociacion espanola de porfiria
C/Alonso Cano 20, 7b
28003 Madrid
Tel: +34 606 18 57 38

Porfyricentrum Sverige-The Swedish Porphyria Association
Riksföreningen mot porfyrisjukdomar
c/o Erica Lundström
Sköntorpsvägen 120
SE-120 53 Årsta, Sweden.


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,

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.


British Porphyria Association
Chairman : John Chamberlayne, 136 Devonshire Road, Durham City, DH1 2BL.
Helpline : 0300 30 200 30 or

United States of America

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