September 2024

True North Resilience: Kira Young’s Story

By |September 15th, 2024|Advocacy, Blog, MAS, Northwest Territories, Rare Disease, sJIA, Stories|

At Cassie + Friends, we believe that every child and family should have access to timely and optimal rheumatic disease care. That’s why we launched the C+F Northern BC Project, to better understand the barriers to diagnosis, care, and patient support for families living in remote/rural communities and explore how we can work [...]

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 2024

#WhyIRun – Lillian, Our Rheumatic Disease Warrior

By |June 19th, 2024|#WhyIRun, Ontario, Ottawa, sJIA, Stories|

#WhyIRun For Lillian - Our Rheumatic Disease Warrior Our journey with Rheumatic Disease began in June 2022. After 11 days of fever, Lillian, then just shy of her 3rd birthday, was seen, diagnosed, and treated for Incomplete Kawasaki disease at CHEO (Children’s Hospital of Eastern Ontario). Luckily, she responded to the IVIG treatment and [...]

February 2024

Reine Hodroj – Rare Connection with Behçet’s disease

By |February 2nd, 2024|Blog, Ontario, Rare Disease Stories, Stories, Toronto|

Reine Hodroj - Learning to Live with Behcet's Disease Living with a chronic illness is an unimaginable challenge, and Behcet's Disease has been my constant companion in this journey. This rare autoimmune condition, characterized by recurrent oral and genital ulcers, skin lesions, and systemic inflammation, has disrupted my life in many ways. However, my [...]

March 2023

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. [...]

April 2022

April 2021

Oliver’s Diagnostic Journey: Periodic Fever Syndromes

By |April 15th, 2021|Fever Syndromes, Northern BC, Rare Disease Stories, Stories|

 Meet Oliver! A vibrant young boy with autoinflammatory disease living in Williams Lake, BC! Oliver has always been the type of child that brings joy to everyone around him. We couldn’t go to the grocery store without the smiling baby drawing everyone near. His first year of life was good. He was a perfectly [...]

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