Connecting Canada for rare disease care and research

Connecting Canada for rare disease care and research The Canadian Rare Disease Network (CRDN) is uniting care, research, and lived experience to improve the rare disease journey in Canada. Over 3 million people across Canada are affected by 7,000+ known rare diseases (RDs), many of which are severe, progressive, and life-limiting [1, 2]. These numbers reflect real people: children spending their early years in hospitals, parents turned full-time caregivers and advocates, and adults facing daily uncertainty about their health and future. Yet patients continue to fall through cracks of Canada’s health and research systems because they don’t fit the mold.

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Publication Details

Journal
Open Access Government
Published
2025-10-17
DOI
https://doi.org/10.56367/oag-048-12295
Primary Topic
Genomics and Rare Diseases
Type
article
Field-Weighted Citation Impact
0.00
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article

Connecting Canada for rare disease care and research

François P. Bernier, Ian Stedman, Kym M. Boycott, Leanne Marie Ward et al.
Open Access Government
Genomics and Rare Diseases
article

Connecting Canada for rare disease care and research

François P. Bernier, Ian Stedman, Kym M. Boycott, Leanne Marie Ward, Durhane Wong‐Rieger, Svenja Espenhahn
article en

Abstract

Connecting Canada for rare disease care and research The Canadian Rare Disease Network (CRDN) is uniting care, research, and lived experience to improve the rare disease journey in Canada. Over 3 million people across Canada are affected by 7,000+ known rare diseases (RDs), many of which are severe, progressive, and life-limiting [1, 2]. These numbers reflect real people: children spending their early years in hospitals, parents turned full-time caregivers and advocates, and adults facing daily uncertainty about their health and future. Yet patients continue to fall through cracks of Canada’s health and research systems because they don’t fit the mold.

Open Access GovernmentVol. 48(1)
University of Ottawa (CA), University of Calgary (CA), York University (CA), Canadian Organization for Rare Disorders (CA), Canadian Respiratory Research Network (CA)
Openalex Percentile: Top 68%
Genomics and Rare Diseases
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