August 2024

Radiant Resilience: Isla the JDM Warrior

By |August 4th, 2024|Blog, JDM, Ontario, Rare Disease, Rare Disease Stories, Stories, Toronto|

Radiant Resilience: Isla the JDM Warrior It was fall of 2021 and Isla was 6 years old. Her life was pretty much centred around her unwavering excitement for Halloween and being able to wear her unicorn costume to go trick-or-treating with her best friend, Alice. Over the month of October, [...]

June 2023

Tough as Nails: A Father Reflects on his Two Daughters and Childhood Rheumatic Disease

By |June 5th, 2023|Advocacy, High School, JIA, Post- Secondary, Rare Disease, Stories, TMJ|

"We're very proud of our girls for showing the fortitude needed to not let these diseases define them." Hello families! My name is Mike Wiens, husband to Jesica and father to two girls, Vanessa 24 yrs old, and Sarah 23 yrs old. We're happy to call Port Moody, BC our home since relocating here [...]

February 2023

My disease is so rare I don’t yet have a diagnosis.

By |February 15th, 2023|Stories|

To recognize rare disease day, we want to shine a light on all rare diseases, including the story of Zahra, whose rare autoinflammatory disease is still unknown, despite extensive genetic testing. Rare diseases affect 300 million people worldwide, and many of the 24,000 children in Canada in the pediatric rheumatic disease community are [...]

It’s Not Easy Being Rare: Working Together to Navigate the Challenges of Systemic Autoinflammatory Diseases

By |February 9th, 2023|Blog, News, Rare Disease Stories, Stories|

It is not easy being rare. Being rare means that there is not a lot of knowledge, research, and treatment options available for youth and families affected by systemic autoinflammatory diseases (SAIDs). And that is exactly what the recently formed Can-SAID advisory group, a branch of Cassie + Friends (C+F), wants to change. [...]

August 2020

Autoinflammatory vs. Autoimmune – What’s the difference?

By |August 19th, 2020|Advocacy, Blog, Home Page, MAS, Rare Disease, Rare Disease Stories, Research, Resources, Stories, Vasculitis|

Autoinflammatory vs Autoimmune Diseases Coined less than 20 years ago, the word autoinflammatory is often confused with autoimmune—so, what’s the difference? When we think of the word autoimmune, most people understand that it means your body is attacking itself the way it attacks invaders, like bacteria and viruses. These autoimmune responses run on a [...]

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