PRESIDENT, DIRECTOR SINCE 2017

I got involved in CAP when I started looking for treatments for EPP. I then became interested in giving back and working with patients and health care providers in connecting each other nationally across Canada. We haven't made it there yet, but hoping to build our little organization into a big and brilliant one, tiny steps at a time.

VICE-PRESIDENT, DIRECTOR SINCE 2021

In 2016, I received a diagnosis of Variegate Porphyria and sought additional information about my blood disorder. I discovered CAP through a recommendation from a Porphyria group on social media.

I joined the board because I have a strong passion for supporting others, particularly in the rare disease community, with a focus on patients dealing with Porphyria.

I aim to make a difference for people with Porphyria by raising awareness, advocating for improved healthcare resources, and fostering a supportive community for those affected by this rare disease.

Email kburns@porphyriacanada.ca

Instagram @vancouverislandmomma

TREASURER, DIRECTOR SINCE 2014

I originally got involved through the suggestion of my doctor as a way to advocate for my own care, then as I got more involved and learned more about the many realities people with porphyria are faced with, I really just wanted to use any skills I may have to help make those realities a little easier for all porphyria patients.

SECRETARY, DIRECTOR SINCE 2014

When a family member was diagnosed with acute hepatic porphyria, I looked for information and help. I will forever be grateful for the support that I received from what was then a provincial porphyria group in Alberta. This provincial group went on to become the Canadian Association for Porphyria. I joined the board to continuing learning about Porphyria and to offer support to other patients and family members because I know first-hand how important this is. My hope is that our organization can be instrumental in educating the public and medical personnel about Porphyria so that individuals can get a proper diagnosis and then timely access to appropriate treatment & care.

DIRECTOR SINCE 2022

I became involved with the Canadian Association for Porphyria/Association Canadienne de Porphyrie (CAP/ACP) because of the ever-present barriers to navigating comprehensive and timely access to care for my family members living with porphyria, members of the porphyria community and myself. As a healthcare professional and as someone with porphyria, advocacy, education, and equitable access to care are the biggest fundamental goals I work towards.

DIRECTOR SINCE 2016

I got involved with this organization because Acute Intermittent Porphyria is in my family. I wanted to use my experience as an event planner to help raise funds and awareness for CAP/ACP. It was very important to me and my family to help bring access to treatment across Canada.

DIRECTOR SINCE 2023

I have personally benefitted from various EPP support groups throughout the years and hoping to be able to support others who are dealing with Porphyria.

DIRECTOR SINCE 2024

As someone who has lived with erythropoietic protoporphyria (EPP) my entire life, the Canadian Association for Porphyria has provided me with vital treatments and information that transformed my world. Joining the Board, I am eager to advocate for individuals with porphyria across Canada and beyond, ensuring support and resources for all.

DIRECTOR SINCE 2023

I was introduced to porphyria in 2019 when my baby was diagnosed with Congenital Erythropoietic Porphyria. For our little family, it was a plunge into the unknown. Since then, it's been a constant learning curve about what works and what doesn't, what she can and can't do, and many other challenges. If I had just one goal, it would be to raise awareness of the different types of porphyria and to share the various resources available to support sufferers and their loved ones. Of course, I'd like to develop French-speaking resources on our side of the Atlantic, because it was very difficult for us when we were first diagnosed.

DIRECTOR SINCE 2024

I became involved with the Canadian Association for Porphyria as a way to support my partner, who is living with acute hepatic porphyria. This journey has given me the privilege of seeing our healthcare system from various angles—both as a professional and a family member. Through this experience, I have gained deep insights into the challenges patients and families face navigating rare diseases. I am truly excited to be part of this team and work together to make it easier for our community to access the support and resources they need.

DIRECTOR SINCE 2023

DIRECTOR SINCE 2023

I have a teenager with EPP and would like to help get available treatments approved for use and/or accessible to Canadians - ideally both adults and youth. I would also like to help increase awareness of Porphyria in the medical field and general population.