Events and Meetings

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

Annual General Meeting

Sunday, June 8, 2025
via Zoom

More details to come…

Turn Canada #PurpleforPorphyria 2025

Join the porphyria community on May 18, 2025, as we light up Canada #PurpleForPorphyria! Together with patients, caregivers, advocates, and friends, we’ll illuminate monuments and landmarks across the globe to shine a spotlight on porphyria awareness. Here in Canada, we’re working tirelessly to make sure our nation glows purple in support of this important cause. Let’s come together to spread knowledge, inspire change, and show the strength of our incredible community!

Check back often to see the latest locations committed to going #PurpleForPorphyria!

Light up Locations

PAST EVENTS

February 28, 2025, is Rare Disease Day, a time to raise awareness and promote understanding of porphyria and all rare diseases worldwide.

We invite everyone to join the effort by lighting their homes in Rare Disease Day colors on February 28. Meanwhile, our Vice President, Kelly Burns, is working tirelessly to illuminate some of Canada’s most iconic landmarks in support of this important cause.

Stay tuned to this page for a full list of locations that will #LightUpForRare this February!

Watch Canada #LightUpForRare

Light up Locations

Turn Canada #PurpleforPorphyria 2024

On May 18, 2024, we joined our friends around the world to raise awareness of porphyria and advocate for greater access to diagnosis and treatment.

Many of our Canadian landmarks turned purple too!

Light up locations

Never miss an event! Sign up for our newsletter.