#CareforRare: Supporting Families Affected by Rare Childhood Rheumatic Diseases
#CareforRare is more than just a special awareness day. It’s our year-round commitment to the youth and families impacted by rare childhood rheumatic diseases in Canada.
While Rare Disease Day is celebrated every year on the last day of February, at Cassie + Friends, we #CareforRare every day. As the only national charity focused exclusively on the needs of children and families living with Juvenile Arthritis and other rheumatic diseases, we are dedicated to raising awareness and empowering families through our core pillars of Connection, Action, Research, Education, and Support (Cassie CARES).
We believe every child deserves a bright future. Join our mission to transform kids’ and families’ lives today and find much-needed answers for a pain and symptom-free future!
“We used to look at Anisha and wonder if it was going to get any better…now she is a mischievous 4-year-old girl who is very excited to go to Disneyland with her family. I would like to urge everyone to seek help in the community, in the hospital, use the resources available and never give up hope. As parents, it’s important that we support each other… “
– Apoorva, Mom to Anisha, age 6, diagnosed with DADA2
Want to learn more about rare childhood rheumatic diseases?
Visit cassieandfriends.ca/rare to find in-depth information and resources. Our ClassRheum Resource Hub also offers valuable tools on treatments, physical activity, mental health, nutrition, and much more to help you navigate the challenges of these conditions.
Show you #CareForRare: Ways to Get Involved
Whether you’re personally affected by a rare childhood rheumatic disease or want to support those who are, there are many ways to make a meaningful difference. Here’s how you can get involved:
Share Your Story
Living with a rare disease can feel isolating, and a lack of awareness only adds to the challenge. Your story could bring comfort and understanding to others facing similar struggles. We’re looking for stories from patients, caregivers, healthcare professionals, and researchers.
To share your story, email samantha@cassieandfriends.ca or tag @cafsociety on social media using #CareforRare.
Join Our Community
One thing we hear from every family we meet is the need for connection—connection to information, to better diagnostic pathways, to more effective treatments, and to others who truly understand. Our Cassie + Friends community is a place to connect, learn, and share experiences. It’s where we can celebrate the triumphs and support each other through the challenges.
Join us today in our Caregiver Support Group, and stay in touch by signing up for our newsletter.
Get Involved in Research
As part of the Cassie + Friends Care and Research Network (CREW), you can help shape the future of research for childhood rheumatic diseases. By joining CREW, you’ll have the opportunity to provide invaluable insights and direct the research that affects your community. Help develop study questions, participate in focus groups, offer the patient or caregiver perspective, and ensure research stays relevant to the needs of families.
Learn more and see available research opportunities on our Research Opportunities page.
Donate or Become a Monthly Donor
Your support can make a real difference in the lives of children and families affected by rare childhood rheumatic diseases. Whether you choose to make a one-time donation or become a monthly donor, your contribution helps us fund advocacy efforts, raise awareness, provide practical support to families and advance critical research that will lead to better treatments and a brighter future for these children. Donate today and show you #CareForRare.
Together, We Can Make a Difference
Every step we take towards raising awareness, improving research, and building connections brings us closer to a future where children with rare rheumatic diseases receive the care and support they deserve.
Join us in this crucial movement, and together, we can create lasting change.
Check out some of the ways the Cassie + Friends’ community is putting the ‘CARE‘ in #CareForRare.
C – Collaboration
To Dr. Dilan Dissanayake, a Pediatric Rheumatologist at SickKids Hospital in Toronto, #CareForRare means developing a new national network to facilitate unprecedented collaboration among pediatric rheumatology researchers and patients impacted by rare systemic autoinflammatory disorders.
A – Action
Sara Ethier wears many hats: TRAPS Parent, C+F Parent Leader, and Canadian Organization for Rare Diseases Board Member. Her #CareforRare message is to take ACTION and get connected with organizations like Cassie + Friends where you can meet others and find support.
R – Raising Awareness
Alberta-based mom, Apoorva, hopes as many families as possible will get behind #CareforRare so more kids can be diagnosed and access treatment as quickly as possible. “We need to use our voices to build understanding,” says Apoorva, whose daughter Anisha, lives with a rare genetic auto-inflammatory disease called DADA2.
E – Education
Dr. Kelly Brown of BC Children’s Hospital Research Institute, shares just how important education, training, and research are to understanding rare diseases and finding new and innovative treatments. The real success of #CareforRare, she says, relies on having active, engaged patients in research and being able to collaborate with organizations like Cassie + Friends.
Read #CareForRare Patient and Family Stories
