Events and Meetings

Meet others who understand what you’re going through. Hear from special guests who can help you navigate your porphyria journey.

Upcoming Events

February 28, 2025 is Rare Disease Day and we will be taking time to mark the occasion as we work to achieve greater knowledge and acceptance for porphyria and all rare diseases around the globe.

We hope you will join us for this and all the special events we have planned in 2025!

Watch Canada #LightUpForRare

People around the world are invited to light their own homes in Rare Disease Day colours on February 28th. Our Vice President, Kelly Burns, will be working tirelessly to see some of Canada’s most well known landmarks shining bright as well!

Watch this page for a comprehensive list of locations that will #LightUpForRare this February!

Light up Locations

    • Burnaby

    • Edmonton

On May 18, 2025, we’ll be joining our friends around the world to raise awareness of porphyria and advocate for greater access to diagnosis and treatment.

Turn Canada #PurpleforPorphyria

On Saturday, May 18th invite your colleagues and friends to wear purple for porphyria. Share your photos with the hashtag #PurpleforPorphyria #globalporphyriaawarenessday #porphyriacanada #porphyria #myporphyria

In Canada, many of our landmarks will be turning purple too! Stay tuned to this page to see all of beautiful buildings, historic places, and local destinations that will be #PurpleforPorphyria.

Light up locations

    • Burnaby: City Hall and Guideway, May 18

    • Coquitlam: Lafarge Lake & along Pinetree Way May 15

      Duncan: World’s Largest Hockey Stick Cowichan May 18

    • Esquimalt: Archie Browning Sports Centre May 18

    • Esquimalt: Waterpark May 18

    • Nanaimo: City of Nanaimo Bastion May 18

    • Port Coquitlam: City Hall on May 18

    • Saanich: City Hall May 18

    • Surrey: Civic Plaza, May 18

    • Trail: Victoria Street Bridge, May 18

    • Vancouver: BC Place May 18

    • Vancouver: City Hall May 18

    • Vancouver: The Burrard Street Bridge May 18

    • Vancouver: Convention Centre May 18

    • Vancouver: Olympic Arms of the Cauldron

    • Vancouver: Science World, May 18

    • Vancouver: Sails of Light May 18

    • Vancouver: Bloedel Conservatory May 19

    • Vancouver: Pacific Coliseum May 18

    • Victoria: B.C. Legislature May 18

    • Victoria: City Hall May 18

    • Whistler: Fitzsimmons Bridge May 18

    • Calgary: Reconciliation Bridge, May 19

    • Edmonton: High Level Bridge on May 18

    • Fort MacMurray: Saline Pedestrian Bridge May 18

    • Grande Prairie: Centre 2000 Sundial May 18

    • Lethbridge: City Hall, May 18

    • Red Deer: City Hall May 18

    • Sylvan Lake: Lighthouse, May 18

    • Moosejaw: Sask Clock Tower will be LIT PINK May 17-21

    • Regina: City Hall May 17-20

    • Saskatoon: Sasktel Centre on May 18

    • Saskatoon: TCU Place May 18

  • •Selkirk: Selkirk Water Tower May 18

    •Winnipeg: Esplanade Riel Bridge May 18

    •Winnipeg: Winnipeg Sign May 18

    • Barrie: Love Barrie Sign May 18

    • Belleville: Mayor Proclamation only May 18

    • Brampton: Clock Tower May 18

    • Burlington: Brant Street Pier May 18

    • Chatham-Kent: Civic Centre Atrium May 17-20

    • Collingwood: Clock Tower & Proclamation May 18

    • Fort Erie/Buffalo NY: Peace Bridge May 18

    • Guelph: Market Square May 18

    • Hamilton: Hamilton Sign May 18

    • Kingston: City Hall May 19

    • Kitchener: Carl Zehr Square May 18

    • Kitchener: City Hall May 18

    • Kitchener: THE MUSEUM May 18

    • London: City Hall May 18

    • London: JA Taylor building May 18

    • London: Canada Life May 18

    • London: RBC London Place May 18

    • London: Sifton properties on Dufferin May 18

    • Mississauga: Civic Centre Clock Tower May 18

    • Newmarket: Fred. A Lundy Bridge May 17

    • Newmarket: Riverwalk Commons May 17

    • Niagara Falls: May 18 10pm EST

    • Oakville: Town Hall May 18

    • Ottawa: Ottawa Byward Market Sign May 18

    • Ottawa: Shaw Centre May 18

    • Peterborough: City Hall May 18

    • Sarnia: City Hall May 18

    • Toronto: CN Tower May 18

    • Toronto: Toronto Sign May 18

    • Vaughan: City Hall May 18

    • Waterloo: Uptown May 18

    • Windsor: Caesars Windsor May 18

    • Montreal: La Grande Roue May 18

    • Montreal: The Montreal Tower May 18

    • Fredericton: City Hall May 18

    • Moncton- Downing Street May 18-19

    • Moncton: Downtown Place May 18-19

    • Moncton: Avenir Centre May 18-19

    • Moncton: Ian Fowler Oval, May 18-19

    • Charlottetown: City Hall Tower May 18

    • Summerside: City Hall May 18

    • New Glasgow: Glasgow Square Theatre May 18

    • Ganders: Town Hall May 17-18

    • Mount Pearl: City Hall on May 18

    • ST Johns: Town Hall March 20-26

    • ST Johns: Confederation Building May 18

Participate in the #MyPorphyria Campaign

The #MyPorphyria awareness campaign launches on May 18th and you can be a part of it!

Porphyria is so much more than a list of symptoms. Each and every porphyria patient is unique and has their own story. #MyPorphyria provides the patients’ perspective on their porphyria.

You can help raise awareness through this campaign:

➡ Create your own #myporphyria post. Graphics and instructions here. Not sure how to create your own? Contact us!

➡ Keep an eye out for campaign videos, stories and posts on @PorphyriaCanada social media. Like, comment and share!

➡ Check out the perspectives of patients from around the world by following @GlobalPorphyria on Instagram, YouTube and Twitter.

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