The Canadian Rare Disease Network (CRDN) welcomes the Government of Canada on the introduction of Bill S-5, the Connected Care for Canadians Act, which seeks to establish modern, interoperable standards for how health information is shared and used across the country. This is an important and timely step toward a more connected, person-centred health system that empowers patients and clinicians with timely, secure access to essential health data — a foundation that is critical for people living with rare diseases.
For people living with rare diseases, connected, trusted, and timely access to health information is not a convenience — it is a necessity. Rare disease diagnosis and care often involve multiple specialists, laboratories, clinics, and jurisdictions. Fragmented or inaccessible health records contribute to delayed diagnoses, repeated and unnecessary testing, gaps in care continuity, and missed opportunities for early intervention. By improving how health data flows between providers, systems, and patients, Bill S-5 lays the foundation for more coordinated, safer, and person-centred rare disease care.
The rare disease community has long advocated for systems that treat health data as a shared asset for care, learning, and innovation. CRDN views Bill S-5 as a key building block in advancing a more integrated health system — one that supports earlier diagnosis, continuous learning, and cross-sector collaboration. Interoperability and connected care are also foundational to precision health approaches, not only enabling better individual care but also contributing to broader research and improvement efforts.
As this legislation progresses, CRDN looks forward to engaging with governments, patients, clinicians, provinces and territories, and health system partners to ensure that implementation reflects the needs of people and families affected by rare diseases. Prioritizing secure, patient-centred data exchange can help ensure that every Canadian with a rare condition — regardless of where they live or how complex their care journey — receives safer, more connected, and more equitable care.
Learn more: Health Canada