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.
Authors
- François P. Bernier (ORCID: https://orcid.org/0000-0001-7063-4269)
- Ian Stedman (ORCID: https://orcid.org/0000-0002-7121-8184)
- Kym M. Boycott (ORCID: https://orcid.org/0000-0003-4186-8052)
- Leanne Marie Ward (ORCID: https://orcid.org/0000-0003-1557-9185)
- Durhane Wong‐Rieger (ORCID: https://orcid.org/0000-0001-5771-5400)
- Svenja Espenhahn
Institutions
- University of Ottawa (CA)
- University of Calgary (CA)
- York University (CA)
- Canadian Organization for Rare Disorders (CA)
- Canadian Respiratory Research Network (CA)
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