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____ Monday December 7, 2015 ____


Rare Disorders

Exploring the Impact of Canada's Healthcare Research Footprint on Rare Diseases

Unity and Collaboration Mainstays of Rare Disease Community

Toronto - On Friday, the Canadian Organization for Rare Disorders (CORD) and Shire Pharma Canada ULC ("Shire"), in collaboration with BIOTECanada, hosted a scientific exchange at the MaRS Discovery District in Toronto. Canadian rare diseases stakeholders gathered to discuss Canada's success in translational research and its positive impact on people living with orphan conditions -- echoing the call for continued investment and collaboration in research as part of Canada's Rare Disease Strategy.

From left to right: Phil J. Vickers, Global Head of Research & Development, Shire, Dr. Daniel Drucker, Senior Investigator, Lunenfeld-Tanenbaum Research Institute, Durhane Wong-Rieger, President & CEO, CORD, Andrew Casey, President & CEO, BIOTECanada and Reza Moridi, Ontario Minister of Research and Innovation gather to share insights on Canada's success in translational research for rare disorders.

The event featured world-class Canadian researcher, Dr. Daniel Drucker, who detailed the research milestones and innovation story that began almost two decades ago with the discovery of the biological effects of GLP-2. Further, he illustrated how multi-sector collaboration led to the development and recent Health Canada approval of an innovative therapy and a prime example of a Canada-made success story in rare disease research.

Ontario's Minister of Research and Innovation, Reza Moridi joined Andrew Casey, President and CEO of BIOTECanada, Durhane Wong-Rieger, President and CEO of CORD, and Phil Vickers, Global Head of Research & Development, Shire, to speak to the opportunities to bridge the gap between basic science and the development of therapies for individuals living with rare diseases in Canada, and worldwide.

Canada's Rare Disease Research Ecosystem

According to BIOTECanada's recent report, "The Canadian Rare Disease Therapies Landscape: Bridging Opportunity to Reality," there are currently 452 medicines and vaccines in development for rare diseases.1 The report suggests that while Canada lags behind other countries in developing a comprehensive rare disease strategy, its biopharmaceutical industry, governments, research institutes and not-for-profits have been actively involved in supporting/conducting important research to develop these treatments -- a trend which will help ensure Canada continues to play a leading role.1

The report further illustrates the need for continued investment and support in the following areas:

(1) research on rare diseases, such as genetic, epigenetic and pathophysiological studies; and
(2) development of applications for diagnosis, such as identification and characterization of (bio)-markers for diagnosis.1

Promoting innovative research in Canada is one of the five goals of Canada's Rare Disease Strategy developed by CORD, following extensive consultations with stakeholders across the country. The strategy aims to achieve the following: 2

1. Improve early detection and prevention
2. Provide timely, equitable and evidence-informed care
3. Enhance community support
4. Provide sustainable access to promising therapies
5. Promote innovative research

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