#CareForRare

In this special Rare Disease Month edition of “Where Are They Now”, we caught up with Zahra Alidina. In 2023, Zahra shared what life was like living with an autoinflammatory disease that is so rare it doesn’t even have a name. We’re so honoured to share this update from Zahra below.…

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…

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, we started to notice that she…

Annika hurt her ankle in December 2021. She complained of pain, but we didn’t see any swelling or bruising. We took her to our family doctor, who then sent her for an X-ray. He didn’t see anything from that, so we went home but Annika still complained of pain. In…

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…

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 story took a positive turn when…

Sophie Finn is a student, a C+F Youth Ambassador, a soccer coach, and a JDM warrior. This is her story. My story began in Grade 7, when I started to experience unexplained pain in my lower back. At the time, I was playing soccer and my goal was to make…

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…

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…

Meet Sheila and Jim! They’ve shared their family’s journey with the rare rheumatic disease, CRMO, below. Sheila and Jim live in Qualicum Beach on beautiful Vancouver Island. They have three sons, two of which live with Chronic Recurrent Multifocal Osteomyelitis (CRMO). Nolan was diagnosed with CRMO at the age of…

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.…

Written by: Sara Ethier “I wrote this piece to share my son’s journey of living with a rare, one in a million Autoinflammatory Disease. Rare means that there is not a lot of research or treatment options available to children like my son who suffer. I appreciate the small steps…