Rare 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 scale [...]
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