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Under the umbrella of childhood rheumatic disease, JIA is the most common with 1-in-1000 kids affected in Canada, but there are also many other rare rheumatic diseases. Join us on February 20th at 4:30 PM PST | 7:30 PM EST for a special Rare Talks: Parent Check-In discussion where we’ll connect and chat about the rare disease experience. We’ll also hear directly from SJIA parent speaker, Rachel Chisholm, who will share her family’s disease journey, relatable across all disease types including:

  • trying and switching medications and ongoing symptom management
  • learning to be your own advocate and demonstrating resiliency to your kids
  • setting realistic expectations and practicing caregiver self-care

Register now and have your notepad handy as this conversation is sure to spark new ideas, provide key takeaways, and impact how your family moves forward on your rheumatic disease journey!

All rheumatic disease types welcome, we can’t wait to see you there!

Meet Our Parent Speaker:

Rachel Chisholm, CHEO Parent and Mom to Lily

Like many rare rheumatic disease parents, Rachel had no idea that her daughter Lily’s disease type existed before their family’s journey began. What they initially believed to be Kawasaki’s disease, later evolved into a Systemic Juvenile Idiopathic Arthritis (SJIA) diagnosis, a diagnosis that’s now also in question and an experience familiar to all rheumatic disease families.

The rheumatic disease journey is a marathon, not a sprint. And Rachel has learned that “We still don’t really know what this is…and there isn’t going to be a magical day where we get answers…it’s going to happen over time” a sentiment that many families in our community can relate to.

Rachel is looking forward to speaking at our RareTalks event where she’ll deep dive into the twists and turns that her family has navigated and lessons learned along the way. You can read more about Lily’s story here.

Hosted by C+F’s Family Engagement Coordinator and JA Mom, Marissa Sangers (Woodstock, ON) who will share information about helpful tools and resources, opportunities to stay connected, and ways to get more involved in our community.

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