The Canadian Rare Disease Network (CRDN) – Réseau Canadien des Maladies Rares is thrilled to announce its official launch today, February 29, 2024. Approximately 1 in 12 individuals in Canada are affected by a rare disease. The pan-Canadian network is focused on uniting the country’s leading clinical, scientific, and patient expertise to accelerate innovative care and research. The goal? For all people living with a rare disease and their families to have better lives through enhanced care and achieve their full potential.
Approximately 1 in 12 people in Canada live with a rare disease.
“Imagine living every day with a complex, chronic disease that impacts your ability to work and play, struggling for months – often years – without answers,” says Dr. Francois Bernier, Chair of CRDN, Professor of Medical Genetics and Pediatrics, University of Calgary Cumming School of Medicine, and Project Lead, One Child Every Child, Alberta Children’s Hospital Research Institute. “We are joining forces across sectors, working shoulder-to-shoulder with children and adults suffering with rare diseases to end the diagnostic odyssey,” he says.
Rare Lives, Shared Strength
“The CRDN is the turning point for diagnosis and care for Canadian patients and families with rare disease,” says Durhane Wong-Rieger, PhD, President & CEO, Canadian Organization for Rare Disorders (CORD).“It will deliver on the vision of integrated, timely, and optimal care proposed and pursued by our patient organizations for over a decade and now to be realized through the collaboration of so many true believers.”
In 2023 the Government of Canada announced Canada’s first National Rare Disease Drug Strategy with an allocation of $1.5 billion over three years. The CRDN is focussed on fostering innovations across the board – from medications to holistic lifestyle interventions that will optimize the federal funding and other health resources.
“By uniting patient, healthcare, academic, and advocacy organizations from across Canada under a common banner, the network seeks to amplify its impact on the entire spectrum of rare diseases – from diagnosis to treatment, care, and psychosocial support,” says Gail Ouellette, PhD, genetic counsellor, Regroupement Québécois des Maladies Orphelines (RQMO).
“This is a stellar opportunity to prioritize the unique needs of the rare disease community,” says Dr. Kym Boycott, PhD, Medical Geneticist, Children’s Hospital of Eastern Ontario (CHEO), Senior Scientist, CHEO Research Institute, and Professor of Pediatrics, University of Ottawa. “CRDN allows us to improve diagnostics and treatments for those with rare diseases from coast to coast to coast.”
Key Highlights of the CRDN
The work of the CRDN focuses on three interconnected pillars:
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- Diagnostics & Registries Pillar: Accurate, timely diagnostics and robust patient registries to facilitate research and improve understanding of disease mechanisms and natural history.
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- Innovative Therapies Pillar: Pharmacological and non-pharmacological innovations, including holistic approaches – medical devices, therapeutic techniques, and lifestyle interventions for overall well-being.
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- Care, Support & Empowerment Pillar: Children and adults with rare diseases and their families have multi-dimensional needs requiring comprehensive support: medical, mental health, disability, psychological wellbeing, school/education, finances, social and home care needs.
Join CRDN in Transforming Rare Disease Care
The CRDN invites you to join us on this impactful journey. We invite existing organizations, networks, and initiatives with an interest in rare diseases to rally forces and contribute to a collective effort of the CRDN to elevate Canada as a global leader in innovative rare disease research and care. Together, we will make a difference in the lives of those affected by rare diseases, shaping a more inclusive and supportive healthcare landscape for all.
Join the Conversation
For more information about the CRDN and how to get involved, visit www.canadianrdn.ca and sign up for our newsletter. Follow us on X and LinkedIn and join the conversation using #CRDN #RareLivesSharedStrength #Canada4Rare #RareDiseaseDay
Discover insights from Dr. Bernier’s address during the parliamentary press conference where he together with rare disease advocates marked the launch of the Canadian Rare Disease Network: