Message from CAP’s Vice-President

From CAP Newsletter, March 26, 2026

As we head into Global Porphyria Awareness Day, I’ve been reflecting on just how much momentum we are building together as a community.

Our Light Up for Porphyria campaign continues to grow in the most incredible way. Right now, we have over 60 landmarks scheduled to be lit across Canada. Every one of those lights represents awareness, connection, and a reminder that no one living with porphyria is alone. It’s something that never stops feeling powerful to see.

I also want to recognize our board member, Ian McCool, who recently spoke at London Health Sciences Centre for Rare Disease Day. He shared important perspectives on treatment, access, and care, and continues to be a strong advocate for improving access to therapies for those living with EPP in Canada. His dedication to this work is making a real difference.

For Rare Disease Day, we were proud to collaborate with the Global Porphyria Advocacy Coalition on two videos to help raise awareness for Global Porphyria Day. The response and engagement we saw, along with the continued conversations across our social media, have been incredibly encouraging. It’s powerful to see our community sharing, connecting, and helping bring more visibility to porphyria.

I would also like to extend a sincere thank you to Healwell AI for the opportunity to speak and for their generous $2,500 donation in support of our work. Partnerships like this help us continue to grow our impact and reach more people in meaningful ways.

Thank you for continuing to show up, speak out, and support one another. Together, we are making porphyria more visible, more understood, and impossible to ignore.

Kelly Burns

CAP Vice-President