Alberta (Canada) Porphyria Society
  • Home
  • What's New
  • Information about Porphyria
    • Guide to Porphyria
    • Types of Porphyria
    • Drug Safety Databases
    • EPP
    • Laboratory Investigation of the Porphyrias
    • Canada - Reported Cases of Porphyria
    • Prevalence
  • About Us
    • Alberta Porphyria Society
    • Support for Canadians with Porphyria
    • Network of Rare Blood Disorder Organizations
  • Support
    • Peer to Peer Support
    • International Porphyria Organizations
    • Rare Connect
  • Research
    • Research in the USA and Canada
    • Research - International
  • Resources
    • Orphanet
    • Mobile Web App for the Safe/Unsafe Drug List for the Acute Porphyrias
    • Patient's and Doctor's Guide to Medication in Acute Porphyria
    • Medicalert Canada
    • 2013 International Porphyria Conference
  • How To Help
    • Become A Member
    • Donate
    • Volunteer
  • Past Events
    • 2014, March 26th - 1st Annual Hope Jam
    • 2014 Annual General Meeting
    • Porphyria Patient Education Workshop June 23, 2013
    • Rare Blood Disorders Education Day March 9, 2013
    • 2013 Annual General Meeting and Information Sharing
  • Our Sponsors
  • Our Partners
  • 2015, 2nd Annual Hope Jam

International Porphyria Support Groups

United States

The American Porphyria Foundation
www.porphyriafoundation.com
4900 Woodway, Suite 780
Houston, TX 77056-1837
Toll free: 866-APF-3635
Telephone: 713-266-9617
Fax: 713-840-9552

Office Hours:
8:30am-4:30pm, M-F Central Time

Europe


Rare Connect
www.rareconnect.org/en/community/porphyria

About RareConnect
Living with a rare disease can be an isolating experience. RareConnect was created by EURORDIS (European Rare Disease Organisation) and NORD (National Organization for Rare Disorders) to provide a safe space where individuals and families affected by rare diseases can connect with each other, share vital experiences, and find helpful information and resources.

EPNET
www.porphyria-europe.com
WHAT IS EPNET ? The EPNET mission is to improve lives of porphyria patients by improving the diagnosis and treatment of these rare conditions. EPNET has been funded by the EU DG for health & consumers since 2007. We have established an effective network of specialist porphyria centres throughout the EU. Currently, EPNET consists of 33 EU specialist centres from 21 European and candidate countries that work together to develop an up-to-date consensus based approach to the management of patients and families with porphyria conforming to uniform standards. We also have associate members from Australia, Brazil, New Zealand, South Africa and the USA. Evidence from the last years programme shows that this network and its activities have a positive effect on the quality of diagnosis, number of patients diagnosed and treatment choices (shown through the collection of data, enquiries to the drug database and external quality scheme).

EPNET focuses on:

  • Provision of information to patients (in their own languages) and healthcare professionals;
  • Use of external quality assessment to develop quality standards for diagnosis and clinical advice;
  • A web-based registry to collect data about the porphyrias to inform clinical practice and healthcare planning;
  • Dissemination of information on safety of drugs.

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