Message from CAP’s President
Happy New Year! Well, it’s 2026 and I have some extremely fantastic news to share with you. We have a Canadian site for the Bitopertin trials in Edmonton Alberta and another site opening imminently in Toronto, Ontario. If you are interested in participating in the Bitopertin study with Dr Bruce Ritchie, please reach out directly to his clinic at the following number: 780.407.6090. As soon as the clinic in Toronto is open, I will ensure that I share this directly with our patients on our social media site and on our next newsletter.
We have some other very interesting news to share. Our light up campaign for Global Porphyria Day on May 18th has been launched, and more than 20 sites have already committed to go #PurpleForPorphyria, including:
Reconciliation Bridge, Calgary, AB
Calgary Tower, AB
BC Legislature, BC
Convention Centre and Olympic Cauldron and Arms, Vancouver, BC
Rogers Centre, Ottawa, ON
Civic Centre Clock, Mississauga, ON
If you are out and about, please take photos and share them with us. We would love to share these on our social media sites.
As some of you may know, we published Canadian Acute Porphyria guidelines just over a year ago and are now working on publishing Canadian EPP Guidelines for care. This is very exciting, and I would like to thank our two volunteers, Wil and Aziz, for their support and perseverance, and our health care team, Dr Colantonio, Dr Scott and Dr Croitoru for their time and support with the project. It’s extremely important to have these guidelines in place to ensure the care of porphyria patients is consistent across the country.
Additionally, Dr Colantonio has been kind enough to create a national lab requisition for testing all types of porphyria. If patients are looking to get tested, download the requisition form from our website or contact coordinator@porphyriacanada.ca, and provide it to your HCP to complete. For questions, contact porphyriatestinglab@eorla.ca.
There are other projects in the pipeline for 2026, and as they come to fruition, I will share them with our membership. Thank you for your continued support, and thank you to the Porphyria board who are volunteers. We might be small, but we continue to be mighty.
Michelle Capon
CAP President