Katrina Fontaine
Registered Social Worker, ZebraCARE
Canadians living with rare diseases often face significant psychosocial gaps. A new virtual model aims to improve access and continuity of care.
Canadians living with rare and undiagnosed conditions often navigate a long and exhausting journey. Beyond medical complexity, many individuals and families face significant emotional strain, fragmented care, and limited access to clinicians who understand the realities of living with a rare disease. While medical advances continue, psychosocial supports have not always kept pace with the needs of Canada’s rare disease community.
Counselling that is informed by the realities of rare disease can play an important role in helping individuals adjust to diagnosis, manage uncertainty, and cope with the cumulative stress that often accompanies complex illness. However, geography, the challenge of finding knowledgeable counsellors, and cost barriers can make it difficult to access appropriate care — particularly outside major urban centres.
A targeted virtual model for complex needs
In response to these gaps, a new Canadian social enterprise, ZebraCARE, is preparing to launch virtual psychosocial services designed specifically for people affected by rare and undiagnosed conditions. The service will initially focus on adults living with rare diseases, as well as caregivers supporting both adults and children with rare diseases.
Psychosocial supports have not always kept pace with the needs of Canada’s rare disease community.
The fully virtual model is intended to improve access for individuals in underserved and rural regions. At launch, services are expected to begin in British Columbia and Alberta, with plans to expand nationally as clinical capacity grows. The organization also plans to offer direct billing to many extended health benefit plans where available, helping to reduce administrative barriers for clients.
Built from lived and professional experience
The initiative was founded by a Registered Social Worker whose work in rare disease care is informed by both professional practice and lived experience. This dual perspective helped shape a care model that emphasizes trauma-informed practice and a strong understanding of diagnostic uncertainty.
As demand for specialized rare disease supports continues to grow in Canada, innovative service models can help bridge longstanding gaps between medical care and psychosocial wellbeing. Virtual delivery, in particular, offers the potential to connect highly specialized providers with communities that have historically had limited access to specialized care.
Looking ahead
Future plans include expanding multidisciplinary services, developing group programming, and increasing national reach. The long-term goal is to build a sustainable support ecosystem that evolves alongside the needs of the rare disease community.
Learn more at zebracare.ca.
