Dr Ian Paterson
Cardiologist, Ottawa Heart Institute
The Ottawa Heart Institute is advancing coordinated, research-driven care for rare cardiac conditions across Canada.
Rare heart conditions have long been overlooked in research and clinical care. Because they affect relatively small numbers of people, doctors once had limited data, few effective treatments, and little coordination of care. Today, that’s beginning to change thanks to advances in science and leadership at the Ottawa Heart Institute, home to the Canadian Centre for Rare Cardiac Conditions.
Rare cardiac conditions are typically defined as diseases affecting fewer than one in 2,000 people. Most have a genetic cause, and together they affect millions worldwide. These conditions are a major reason why younger adults develop heart failure or experience sudden cardiac death. In fact, rare heart muscle diseases account for a significant proportion of heart failure hospitalizations.
Diagnosing rare heart conditions can be difficult. Symptoms are often subtle or mistaken for more common heart problems, and access to specialized testing, such as genetic analysis or advanced heart imaging, can be limited. Early diagnosis is critical, especially as new treatments emerge that can slow disease progression or prevent serious complications.
Coordinated care led by the Canadian Centre for Rare Cardiac Conditions
At the forefront of addressing these challenges is Dr. Ian Paterson, a cardiologist at the Ottawa Heart Institute and director of the Canadian Centre for Rare Cardiac Conditions (CCRCC). The CCRCC was created to close gaps in care by bringing expertise, advanced diagnostics, research, and education together in one coordinated program.
We identified a significant gap in coordinated care for patients with rare cardiac conditions across Canada and have worked with stakeholders to improve their health journey.
As Dr. Paterson explains, “We identified a significant gap in coordinated care for patients with rare cardiac conditions across Canada and have worked with stakeholders to improve their health journey.”
Rare cardiac diseases include a wide range of conditions. Some people are born with rare structural heart defects and now survive into adulthood due to surgical advances. Others develop inherited heart muscle diseases, dangerous heart rhythm disorders, rare blood vessel conditions, or inflammatory diseases affecting the heart. Many of these conditions are long-term, progressive, and capable of affecting other organs beyond the heart.
New science, treatments, and a national role in education
Scientific advances are rapidly transforming care. Genetic testing is now central to diagnosing inherited heart disease and identifying at-risk family members. New imaging technologies allow doctors at centres like the Ottawa Heart Institute to detect disease earlier and with greater accuracy. Emerging treatments, including gene-editing technologies, are offering new hope for conditions once considered untreatable.
Despite this progress, access to care remains uneven across Canada. High treatment costs, limited availability of specialized testing, and a lack of coordinated services continue to affect many patients. The CCRCC addresses these barriers by supporting national and international research collaborations, contributing to patient registries, and helping connect patients to clinical trials and emerging therapies.
Education is also a core part of the centre’s mission. “Our work is not just about patient care,” says Dr. Paterson. “It’s also about education — training the next generation of specialists and sharing knowledge with patients, health care providers, and policymakers.”
By combining patient care, research, and education under one roof, the Ottawa Heart Institute and the CCRCC are reshaping how rare heart diseases are diagnosed, treated, and understood — offering new hope to patients and families across Canada.
Visit ottawaheart.ca/clinic/canadian-centre-rare-cardiac-conditions to learn more.
