autoinflammatory

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.…

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 systemic and organ-specific inflammation. These disorders usually start in…

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…

Thanks to the generous support of our donors, we are very excited to now be recruiting for our second International Postdoctoral Fellowship in Pediatric Rheumatology in the Brown Lab (http://kbrownlab.ca) at BC Children’s Hospital Research Institute. Read below to hear from our first fellow, Dr. Lovro Lamot, a Pediatric Rheumatologist…

What makes Family Day a life-changing experience for kids and families affected by Juvenile Arthritis and other rheumatic diseases? Here are the top 7 reasons people attend Cassie and Friends’ Family Day year after year: Knowing you are not alone.  There is simply nothing like connecting and sharing with others…