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 and research, and advocating for more resources and awareness in the rare disease space.
One common theme throughout all of the stories was the need for connection—connection to information, connection to smoother pathways to diagnosis, connection to more precise testing and treatments, and connection to each other. Navigating a rare disease can be isolating and that isolation can come with heavy burdens, like having to teach yourself about your new reality full of unfamiliar terms and experiences, explain your condition to friends and family, educate your own educators and spend day after day without ever having the chance to meet another person facing the same challenges. Many find themselves further burdened by taking on the role of advocate – a worthy role, but one that can be draining all the same as you are called on, again and again, to share your story in hopes of building understanding.
This is why we at C+F are committed to connecting our community. Together, we can harness the incredible power of our collective voices and support one other in our efforts to raise awareness of rare diseases so that no one person has to do it alone.
“We used to look at Anisha and wonder if it was going to get any better…now she is mischievous 4-year-old girl
who is very excited to go to Disneyland with her family. She is amazing. 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, DAD2
Whether you’re living with a rare disease, caring for a loved one with a rare disease, or a healthcare professional in the rare disease community, we would love to hear your story using #CareForRare.
Let’s show our rare disease families and kids that they are not alone. Together, let’s show that we #CareForRare.
Meet Reine, a young adult with Behcet’s disease learning how to navigate the challenges of rare disease (including feelings of isolation) and how important finding community can be:
“These connections have been a lifeline for me, providing a safe space to discuss the challenges of living with Behcet’s Disease and to seek advice on managing symptoms and maintaining a positive outlook.”
If you would like to share your rare disease story or connect with others navigating similar experiences, please email marissa@cassieandfriends.ca.
Here’s how Cassie + Friends is putting the ‘CARE’ in #CareForRare.
C – Collaboration
As Dr. Dilan Dissanayake, a Pediatric Rheumatologist at SickKids Hospital in Toronto puts it, to #CareForRare means joining forces and collaborating with the best in Canada to increase awareness and research about rare diseases. Check out his video, where he shares his experience as one of the leaders developing a new network that promotes unprecedented collaboration among rare disease researchers in pediatric rheumatology across Canada.
Cassie + Friends is proud to collaborate with other organizations serving the rare disease community such as the Canadian Autoinflammatory Network. Check out their video reiterating the importance of raising awareness on Rare Disease Day and everyday!
A – Action
Navigating life with a child who is impacted by rheumatic disease can be challenging. But, as Sara Ethier, TRAPS Parent, C+F Parent Leader, and Canadian Organization for Rare Diseases Board Member, shares in this clip, you aren’t alone on your journey!
To #CareForRare is to take ACTION and get connected with organizations like Cassie + Friends for support. Not only do you gain a community that understands what you are going through, but you also gain access to a network of credible information and resources to help you take charge.
Sara’s commitment to ACTION is shown further as she joins CORD in Ottawa on Rare Disease Day (February 29) to raise awareness and advocate for rare disease families among decision-makers on the hill.
R – Raising Awareness
#CareForRare means raising awareness about rare diseases so that kids like Anisha, who lives with a rare genetic auto-inflammatory disease called DADA2, can be diagnosed and access treatment as quickly as possible. As Apoorva, Anisha’s mother, explains:
“We need to use our voices to build understanding.”
Raising awareness for rare disease can ultimately lead to better disease management, increase the network of support available to patients and parents/caregivers, and ensure that no family has to navigate their disease journey alone!
E – Education
Dr. Kelly Brown of BC Children’s Hospital Research Institute – and one of the only full-time PhD researchers in Pediatric Rheumatology in Canada- shares just how important education, training and research is to understanding rare diseases. She highlights that through research, we can deepen our knowledge, allowing us to find new and innovate treatments.
Kelly also emphasizes the value of engaging patients and fostering collaboration with organizations like Cassie + Friends. By working together, we can conduct impactful research that can bring us closer to a pain-free future for all.
To continue learning about rare disease affecting the childhood rheumatic disease community cassieandfriends.ca/rare.
You can show your #CareForRare by making a one-time donation or by becoming a monthly donor to Cassie + Friends below. We hope you’ll join us in advocating and raising awareness for rare disease families in our community.
