Canadian Association for Porphyria


The mission of the Canadian Association for Porphyria/Association Canadienne de Porphyrie is:
  • to deliver evidence-based information and support to patients with porphyria, their families, health care providers and the general public across Canada
  • to achieve standards and evidence-based comprehensive care for all people with porphyria throughout their lifespans.


From April 2-9, 2022, help us celebrate this year's theme #PorphyriaTogether. Here are 3 simple ways that you can get involved: 

1. Register for our patient gathering

Join us Saturday, April 9, 2022 for a virtual meeting of Canadian porphyria patients and their supporters. It's a chance to learn about new initiatives and treatments for porphyria, share your experiences and connect with others.

2. Share your stories with #PorphyriaTogether

What do you wish others understood about porphyria? What do you wish would change?

Follow us on social media, and share your thoughts and stories with the hashtag #PorphyriaTogether. 


3. Turn the world #PurpleforPorphyria


On Friday, April 8 invite your colleagues and friends to wear purple for porphyria.  Print your sign and share your photos online with the hashtag #PorphyriaTogether.

In Canada, we'll also be celebrating with landmarks like the CN Tower and Calgary Tower being light up purple on April 3rd. Let us know if you see your local landmark light up!




Porphyria can be lonely but you don’t need to go through it alone.

The Canadian Association for Porphyria is hosting a virtual gathering for Canadian porphyria patients and their supporters.

Join us on April 9, 2022 to learn about new initiatives and treatments for porphyria, share your experiences and connect with others.

Date

Saturday, April 9, 2022

Time

  • Atlantic: 3 to 4 pm
  • Eastern: 2 to 3 pm
  • Central: 1 to 2 pm
  • Mountain: noon to 1 pm
  • Pacific: 11 am to noon

Location

Online, must register in advance to receive a link

No cost to attend. Please register in by April 8, 2022. 





Medical Disclaimer

Care has been taken to ensure that the information on this website is accurate at the time of publication. This information is, however, intended for general guidance only. The Canadian Association for Porphyria/Association Canadienne de Porphyrie disclaims for itself and for the author of this information, all responsibility for any mis-statements or for consequences of actions taken by any person while acting on information contained herein. Physicians and patients must make their own decisions according to the individual circumstances of each case.

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