More than a decade later, that vision has become ZebraCARE
Our story
ZebraCARE was born from lived experience, professional insight, and a deep belief that Canada’s rare disease community deserves better.
Early Experiences
Born in the Northwest Territories and raised in the West Kootenay region of British Columbia, I grew up navigating complex health challenges that sparked an early interest in rural and remote healthcare. As a teenager, I travelled eight hours each way to Vancouver for surgeries that involved breaking and realigning my limbs to correct deformities, while many of my other symptoms were dismissed or attributed to mental health.
After moving to southern Ontario for university, I was finally diagnosed with a rare bleeding disorder after years of unexplained symptoms. Years later, a diagnosis of a rare genetic connective tissue disorder helped explain many of the symptoms that had gone unanswered for most of my life.
Seeing the Gaps
Following graduation, I worked as both a social worker and recreation therapist in rural and remote communities. There, I met many individuals and families living with rare diseases whose experiences echoed my own: long diagnostic journeys, fragmented care, and significant barriers to accessing the right support.
While working as a government social worker supporting families of children with disabilities, my own health began to decline. Experiencing both sides of the system, as a professional and as a patient, made it impossible to ignore how many gaps still existed for people living with rare and complex conditions.
The Idea for ZebraCARE
In 2013, during one of the most difficult periods of my life, the idea for ZebraCARE first took shape. As I faced multiple neurosurgeries and the uncertainty of long-term disability, I spent a lot of time thinking about what the future might look like if I was ever able to return to work. One thing became clear: if I returned to work, it would be to build something different and help create the kind of support this community deserves.
A place where people living with rare or complex conditions wouldn’t have to spend their counselling sessions explaining the basics of their diagnosis. A place where clinicians understood the medical, psychological, financial, and systemic realities that shape life with rare diseases. A place built not just for this community, but from within it.
Today
ZebraCARE was created by someone who lives this journey alongside the community we serve.
More than a decade later, that vision has become ZebraCARE.
ZebraCARE is a virtual counselling collective supporting individuals, caregivers, and families affected by rare, undiagnosed, and complex conditions. Our clinicians have both an interest in and experience working with this community. They are also committed to learning about your condition before meeting with you so your time can be spent focusing on what matters most.
As a social enterprise, we believe we have an ethical responsibility to benefit the rare disease community, not just our bottom line. Ten percent of profits are donated to general rare disease organizations, and additional profits are reinvested into expanding accessible services. As we grow, we also hope to contribute to broader conversations around equity, policy, and access to care.
Navigating life with a rare or undiagnosed condition can be isolating and exhausting. While we hold space for the grief and uncertainty that often accompany this path, we also believe deeply in belonging, connection, and informed support.
We’re so glad you’re here.