Contacts and links
To contact the Porphyria Association, or for more ideas or information
on relevant journal articles on Porphyria:
e-mail porphyria@mssociety.com.au
telephone (03) 9845 2737
fax (03) 9845 2777
Lists of safe and unsafe drugs can be found here.
Australian testing locations can be found here.
AUSTRALIAN ORGANISATIONS & INTERNATIONAL ORGANISATIONS
Genetic Support Network of Victoria (GSNV)
www.gsnv.org.au
An umbrella organisation that offers a range of services including information on genetic conditions, contact details for support groups, links
between families affected by the same condition, help starting a support
group, and ongoing liaison with genetic support groups.
Genetic Support Network of Western Australia (GSCWA)
geneticsupportcouncil.org.au
Supporting individuals and families affected by genertic conditions.
Self Help Queensland Inc.
www.selfhelpqld.org.au
SHQ promotes each individual's ability to have control over and participate in the decisions which affect their lives.
The Australasian Genetic Alliance (AGA)
www.australasiangeneticalliance.org.au
The AGA facilitates networking between these genetic support groups, health professionals and patients and families to improve community and professional knowledge of genetic conditions, their impact and available services.
The Association of Genetic Support of Australasia (AGSA)
www.agsa-geneticsupport.org.au
AGSA will endeavour to facilitate contact with another family/individual affected by the same, or similar conditions, and/or provide information about an overseas support group.
Self-Help Organisations United Together (SHOUT)
www.shout.org.au
Shout's mission is to provide a multi-service resource centre to self-help and support groups, and to individuals & families seeking to establish new groups to meet their needs.
New Zealand Organisation for Rare Disorders (NZORD)
www.nzord.org.nz
New Zealand Organisation for Rare Disorders, provides New Zealand's central starting point for information about rare diseases.
The Canadian Porphyria Foundation can be found at
www.cpf-inc.ca
They also maintain an extensive links list.
1-866-476-2801
Newsletter Producer: Kaiten Critchlow
President & Executive Director: Lois J. Aitken.
American Porphyria Foundation
The APF is dedicated to improving the health and well-being of individuals and families affected by porphyria.
www.porphyriafoundation.com
713 266 9617
Executive Director: Desiree Lyon Howe
Porphyria
Europe Initiative is at:
www.porphyria-europe.com
AnestCadizTM
The Andalusian website of Anesthesiology, Critical Care and Pain Treatment, is a non-profitable project set up in mid-2004 exclusively aimed at health professionals.
http://www.anestcadiz.net (English language).
http://www.anestcadiz.com (Spanish language).
German EPP Association (Selbsthilfe EPP e.V.)
A group of Erythropoietic ProtoPorphyrie patients who are looking to build a global EPP network.
www.epp-deutschland.de
Association Française des Malades Atteints de Porphyries
Our association aims at helping patients to better live with their diseases, to create a friendly community while organizing fund raising to find new resources to aid research.
www.porphyries-patients.org
Porphyria Association of Poland
Instytut Hematologii i Transfuzjologii
www.porfiria.pl
President: Ewelina Slowinska
Clinuvel's commercial photoprotection site
photoprotection.clinuvel.com/
___________________________________
Porphyria Association Inc.
(Incorporating PEGS, which began in 1987)
The Nerve Centre
54 Railway Road
Blackburn Victoria 3130
Australia
|
