Porphyria News
Porphyria Advocacy Around the World
In honour of Global Porphyria Day 2025, the Global Porphyria Advocacy Coalition shared a powerful video that brings together voices from porphyria communities around the world.
This heartfelt film features representatives from our incredible Patient Advocacy Groups sharing why they dedicate their energy and passion to advocating for those affected by porphyria.
CAP on “Rarely Discussed” Podcast
CAP’s vice president, Kelly Burns, recently appeared on the “Rarely Discussed” podcast to tell her story and discuss her role spearheading the #PurpleForPOrphyria campaign.
Message from CAP’s President, Michelle Capon
Just returned from an amazing Global Skin conference themed Champions. I love going to this conference as it really energizes me as a patient. I get to listen to amazing content, learn how to make our organization better and catch up with friends that I haven't seen in over two years. What an amazing impact this group has on international patients living with skin conditions. As a side note, there is a resolution that is being heard by the WHO (World Health Organization) in the very near future
Now Available: AIP Physician Education Slides
We partnered with Khure Health to develop the AIP Physician Education presentation on Diagnosis and Treatment of Porphyria…
Message from CAP’s President, Michelle Capon
Happy 2025! As we prepare for Rare Disease Day (Feb 28) I'm excited to announce some key initiatives we will be launching to promote porphyria awareness in the coming months.
Kelly Burns tells her story to CTV
Last year, our own Vice-President of the board, Kelly Burns, was appeared on a segment of Canadian Health & Family on CTV Toronto to tell her story about living with Porphyria.
Message from the President
As the year draws to a close, we are proud to reflect on the significant strides we've made together. Thanks to the collective efforts of our board, volunteers, partners and supporters we have been able to strengthen our financial foundations, expand our social media presence and deepen our connections with patients and healthcare professionals across Canada.
Throughout the year we have actively participated in key conferences including ICPP, CORD, NRBDO and Global Skin.»
Listen to Derry Wilcox on APF’s “Rarely Discussed
Our very own Canadian Association for Porphyria Treasurer, Derry Wilcox, was featured on the November 6th episode of “Rarely Discussed,” an American Porphyria Foundation podcast.
Canadian Association for Porphyria attends the International Congress of Porphyrins and Porphyrias in Pamplona, Spain
The International Congress of Porphyrins and Porphyrias (ICPP) is a major international conference that brings together porphyria researchers, doctors, patient groups and industry stakeholders to present on the latest advancements in porphyria research, treatment and care.
The Canadian Association for Porphyria was fortunate to have three members of the CAP team attend the ICPP.
EPP Story Featured on Patient Voice
Patient Voice spoke with Michelle Capon about the immense mental and physical impact that porphyria can have on those who live with the rare condition.