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Rare Disease
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Rare Disease Treatment and Care Progress Is Worth Celebrating This Rare Disease Day 2026, Canadian families living with rare disease have much to celebrate — and even more to look forward to. Canadian Organization for Rare Disorders
Durhane Wong-Rieger President & CEO, CORD
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Leading the Way in Rare Heart Disease Care The Ottawa Heart Institute is advancing coordinated, research-driven care for rare cardiac conditions across Canada. Canadian Centre for Rare Cardiac Conditions
R Dr. Ian Paterson Cardiologist & Director, Canadian Centre for Rare Cardiac Conditions
are heart conditions affect millions of people worldwide, yet for years they received limited attention due to gaps in research, diagnosis, and treatment. That’s changing at the Ottawa Heart Institute, where the Canadian Centre for Rare Cardiac Conditions (CCRCC) is leading a new, coordinated approach to care. Most rare heart diseases have a genetic cause and are a significant contributor to heart failure and sudden cardiac death in younger adults. Diagnosing them can be challenging, often requiring specialized genetic testing and advanced imaging.
Visit ottawaheart.ca/clinic/ canadian-centre-rare-cardiacconditions to learn more.
Under the leadership of Dr. Ian Paterson, a cardiologist and director of the CCRCC, patients benefit from integrated care that brings diagnosis, treatment, research, and education together. “We identified a significant gap in coordinated care for patients with rare cardiac conditions across Canada,” says Dr. Paterson. By combining cutting-edge science with national collaboration and education, the Ottawa Heart Institute is improving access to care and offering new hope for people living with rare forms of heart disease.
This article was sponsored by the Ottawa Heart Institute.
hrough Canada’s National Strategy for Drugs for Rare Diseases, patients with serious and life-threatening rare diseases are gaining faster access to innovative therapies. For those living with rare conditions, time matters. Earlier access to treatment can reduce the risk of irreversible organ or tissue damage, preserve function, slow or stabilize disease progression, prevent relapses, and, in many cases, prolong survival. The nine therapies currently on the new strategy’s common list of drugs — with more to come — are not incremental advances. They’re breakthroughs: safer, more effective treatments and, in some cases, options where none previously existed. Faster and more equitable access also creates opportunity. As patients across Canada begin treatment earlier, health systems are better positioned to observe, measure, and understand the full impact of these innovations. The next phase of Canada’s National Strategy for Drugs for Rare Diseases must focus on collecting real-world evidence that documents how these therapies improve outcomes, extend lives, reduce complications, and enhance quality of life.
Turning access into lasting impact The common thread across the list of rare disease therapies is clear: each addresses serious unmet needs and delivers meaningful patient value. Demonstrating that value clearly and credibly will help ensure sustained and equitable access across the country. Similarly, Ontario’s Funding Accelerated for Specific Treatments (FAST) program reflects a broader evolution in policy thinking — that timely access and evidence generation can proceed together. While not yet applied to rare-disease drugs, FAST signals how complementary accelerated pathways could further strengthen national progress. On Rare Disease Day, we celebrate momentum — and commit to sustaining it. Canada’s National Strategy for Drugs for Rare Diseases has shown that faster access is possible when patients are placed at the centre of decision-making. The task now is to ensure that this progress endures, so that timely access to life-changing therapies becomes standard practice, not a rare exception.
Learn more at raredisorders.ca.
RARE DISEASE DAY:
Turning Awareness into Action for Duchenne Defeat Duchenne Canada
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n Canada, about 1 in 12 people live with a rare disease, including Duchenne muscular dystrophy, a severe and progressive neuromuscular disorder. For families affected by Duchenne, time matters. Irreversible muscle loss continues daily, and delays in treatment can have lasting consequences. This Rare Disease Day, Defeat Duchenne Canada is calling on communities to stand together and advocate for affordable, timely access to treatments. In October 2025, Health Canada approved AGAMREE
(vamorolone), the first treatment for Duchenne in Canada, marking a long-awaited milestone. But approval is only the first step. Reimbursement decisions are still needed to ensure equitable access across the country. While multiple Duchenne therapies are available in other countries, Canadian families continue to wait. These delays affect mobility, independence, and quality of life. Rare Disease Day is a moment to turn awareness into action and push for meaningful, timely change.
Register now to join Defeat Duchenne Canada’s Rare Disease Day advocacy webinar: defeatduchenne. ca/rarediseaseday This article was sponsored by Defeat Duchenne Canada.
Brayden, Age 20 – living with DMD, Nova Scotia
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