Show your colours for #RareDiseaseDay

“We’ve had dark moments and failed medications. We recognize how much harder our son has to work when he is flaring just to do normal things, like walk up the stairs, go to school, be with his friends.” -Parent, Sara Ethier on her son who lives with TRAPS- a rare disease affecting one in one million people. Read her full, moving essay, “He’s much better than he has been” here.

On February 28th, we celebrate Rare Disease Day on behalf of the kids and families living with rare, childhood rheumatic diseases in our community.

Kids like Thomas, Maeve, and Charlotte – who you will meet below – who bravely face spiking fevers, painful rashes, debilitating joint pain and more. We hope you’ll scroll down to hear how they replied to the question, “What do you want others to know about your condition?”

Rare Kids Need Your Support

By joining us in raising awareness and making a donation today, you will:

• Help more kids get recognized and diagnosed faster for their symptoms
• Support our work to connect rare families in our community so they don’t have to be alone
• Drive forward much-needed research to end kids’ pain for good.
• If you are able, we encourage you to considering joining our special group of Monthly Donors who help us invest in Rare Disease Research and Child/Family Support Programs all year-long.

How can I show my support?

• Read Sara’s story here and share your thoughts with us. Do you have a story to tell that would help other kids and families too?
• Break out the paints! Add colour to your hands (either paint or trace them!) and tag your photo at @CAFSociety with a rare fact about childhood rheumatic conditions – either from your own experience or from research on the internet
• If you live in Vancouver, Edmonton, Calgary or Toronto, we invite you to take a walk with your family to view the the following locations/landmarks in Canada that will be illuminated to mark 2021 Rare Disease Day:
  – CN Tower in Toronto
  – Calgary Tower
  – Edmonton Bridge
  – Vancouver: Canada Place Sails, BC Place Stadium, Olympic Cauldron
• Make your donation in support of #RareKids now.

We are the Faces of Rare

We asked three #RareKids, “What do you want others to know about your condition?” Here are their answers…

Thomas, 13, AB – Tumor Necrosis Factor Receptor-associated Periodic Syndrome (TRAPS)

“Some days in school, the pain is so bad. If I am in my second last period, I can’t call home even though I just want to sleep. If it is an important subject like math or French language arts, and I am feeling bad, then it is really hard for me to focus. It means that I have to go home, rest, and then finish all my work at home because it was too hard for me to do it at school. One out of every three days at school are like this for me. ”

Maeve, 12, ON – Granulomatosis with Polyangiitis (GPA)

“GPA is a rare disease that causes inflammation of small and medium-sized blood vessels. In children, it is very rare with only less than 1 per 1 000 000 children getting it. I sometimes joke that I ‘won’ the anti-lottery. One of the biggest challenges for me has been the medication, especially the high level of steroids. The side effects are really hard to deal with. What I want to tell anyone who reads this, is that things do get better. It is really hard, but within a year I started to look and feel more like my old self again.

Charlotte, 8, ON – Juvenile Idiopathic Arthritis- Enthesitis- Related Arthritis

“Having a rare disease has made me have to be super duper strong and very brave. I can support people when they are sad or hurting because I know how they feel.”

This year Rare Disease is February 28th, which is also Charlotte’s Birthday. Happy Birthday, Charlotte!