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 [...]
A Canadian Registry for Autoinflammatory Diseases The CAN-SAID Initiative Great news for Canadian autoinflammatory patients of all ages: Canada is getting its own registry for systemic autoinflammatory diseases! What exactly is a systemic autoinflammatory disease? Systemic autoinflammatory diseases (SAID) currently include over 50 rare conditions that are caused by uncontrolled [...]
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, [...]
#WhyIRun – Annika’s CRMO Journey 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 [...]
Rare Disease DayRare Disease Day happens each year on the last day of February but we #CareForRare every day. We have been showing we #CareforRare by shining the spotlight on real-life stories from rare disease patients, parents, researchers, and healthcare professionals. Each story emphasizes the importance of building a community of support, collaborating around treatment [...]
Throughout my life I have been granted many titles; mom, wife, daughter, registered nurse, and writer are just a few. These are the titles that are associated with my name. I could be described as outgoing, humorous, modest, and perhaps kind too. These would be some characteristics that people from a distance would use [...]
"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 [...]
RareTalks: Genetics and Childhood Rheumatic Disease There are many rare rheumatic diseases that can affect children, and these conditions can be challenging to diagnose and treat. Some examples of these diseases include JIA, Lupus, JDM, Vasculitis, Behcet's Disease, Dada2, Periodic Fever Syndrome, and many more. Genetics can play a significant [...]
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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