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
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Alberta Chapter
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Rare Connect
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.

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The Alberta Porphyria Society has partnered with four students from Community Service-Learning at the University of Alberta. They are working on updating bylaws and policies for the Canadian Association for Porphyria (CAP) which is applying to become - once again -  a national, charitable organization registered with the Canadian Revenue Agency. Aidan, Cherene, Jacob and Kristan are working on future revisions of the bylaws and policies for CAP. They bring extensive knowledge and energy to this process and we want to thank them for agreeing to work with us. 

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