Strategic Pillars for Rare Disease Progress
CRDN’s work is guided by a shared strategic plan that connects diagnosis, treatment, care, support, research, data, and collaboration into a coordinated roadmap for rare disease progress in Canada.
A shared vision for change
CRDN’s Strategic Plan sets out a collective roadmap for strengthening Canada’s rare disease ecosystem. It reflects the priorities of people living with rare diseases, families, patient organizations, clinicians, researchers, and system partners.
The plan helps guide where CRDN focuses its convening, coordination, working groups, resources, partnerships, and strategic outputs.
View our Strategic Plan
The Strategic Pillars
CRDN’s work is organized around four interconnected pillars. Together, these pillars connect diagnosis, therapy development, care, support, empowerment, and collaboration into a coordinated research-to-care roadmap for rare disease progress in Canada.
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What each pillar advances:
Timely and accurate diagnosis is often the first step toward appropriate care, treatment, support, and research participation. This pillar focuses on improving access to precision diagnostics, strengthening genomic medicine, and supporting registries and data systems that enable research, recontact, care planning, and system learning.
Many rare diseases have few or no approved treatments. This pillar focuses on strengthening Canada’s capacity to discover, test, evaluate, and integrate innovative therapies so that people living with rare diseases can benefit from advances in science and care.
Rare disease care extends far beyond diagnosis and treatment. This pillar focuses on strengthening access to care, resources, mental health supports, community connection, and meaningful patient and family engagement.
Rare disease expertise, data, research, and patient populations are often distributed across provinces, territories, countries, and systems. This enabling pillar focuses on connecting Canadian rare disease partners with one another and with international initiatives to strengthen coordination, reduce duplication, and accelerate shared progress.