Rare Diseases in Canada: Expert Panel Shines Spotlight on the Impact of Sustained Research and Innovation

OTTAWA, February 29, 2024 – In anticipation of Rare Disease Day 2024, Research Canada partnered with the Honourable Senator Marie-Françoise Mégie to host Rare Diseases in Canada on Tuesday, February 27, a virtual panel event featuring five renowned experts representing various national health organizations, universities, and institutes across Canada.

This panel discussion, sponsored by Innovative Medicines Canada and the Stem Cell Network, brought together leading researchers, health innovation stakeholders, and policy makers to discuss challenges in the diagnosis and treatment of rare diseases, access to specialized care and therapies, funding for research and development, and strategies for improving patient support and advocacy.

“Sustained health research and innovation holds promise for improving patient outcomes and quality of life for the countless Canadians directly and indirectly affected by rare diseases,” said Alison Evans, Research Canada President and CEO. “This is a critical area of health research and innovation, and it was an honour to moderate this lively and important discussion.”

Thank you to all our generous event Sponsors, including Cystic Fibrosis CanadaAstraZeneca Canada, and BD Canada.

Research Canada Virtual Panel: Rare Diseases in Canada

Hosted by the Honourable Senator Marie-Françoise Mégie

Senator Marie-Françoise Mégie
Senate of Canada
Alison Evans
Research Canada
Dr. Natasha Chang
McGill University
Area of Research: Muscular Dystrophy

Dr. Jessica Esseltine
Memorial University | Stem Cell Network
Area of Research: Arrhythmogenic Right Ventricular Cardiomyopathy

Dr. Theo Moraes
Cystic Fibrosis Canada | SickKids Research Institute
Area of Research: Cystic Fibrosis

Dr. Isaac Odame

SickKids Research Institute
Area of Research: Sickle Cell

Dr. Bekim Sadikovic
Lawson Health Research Institute | Western University
Area of Research: Epigenomics

About Research Canada

Research Canada is a national alliance dedicated to increasing investments in health research through collaborative advocacy and engaging government, academia, industry and non-profit sectors to build support for long-term health research funding. For more information, visit rc-rc.ca.

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For inquiries:
Christie Tomkins
Manager of Policy and Public Affairs