SOURCE: Canadian Organization for Rare Disorders

December 04, 2015 10:52 ET

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

Unity and Collaboration Mainstays of Rare Disease Community

TORONTO, ON--(Marketwired - December 04, 2015) - Today, 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.

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

Participant Quotes:

Andrew Casey, President and CEO, BIOTECanada
"In many ways, Dr. Drucker's story is similar to those of other Canadian researchers/entrepreneurs who can be found in biotech clusters located in every province of this country. It is a biotechnology ecosystem that is built upon collaborative models uniting entrepreneurs, investors, government programs and industry partners that is supporting the advancement of game changing therapeutics to address and, in some cases, cure life-threatening illnesses. Importantly, with the creation of a regulatory pathway for rare disease medicines Canadian patients will be soon on equal footing with other G20 countries which ensures they have the best in rare disease care."

Reza Moridi, Minister of Research and Innovation
"I am proud of the incredible research capacity and innovative talent we have fostered in our province. Collaboration is the key to harnessing these strengths to improve the care and well-being of patients with rare diseases. I congratulate Dr. Drucker and his team on their success, and look forward to the impacts of continued research on Ontarians and people around the world."

Dr. Daniel Drucker, Senior Investigator, Lunenfeld-Tanenbaum Research Institute
"Basic science is the foundation of future health advances. Canada has many talented clinician-scientists; all efforts made to support research are investments towards a better future for Canadians today and for generations to come."

Durhane Wong-Rieger, President, CORD
"Without innovative research, nothing else happens: no advances in diagnosis, treatment, cure, or quality of life. Canadian researchers have so much untapped talent and commitment to addressing rare diseases; that's why support for research is a cornerstone of Canada's Rare Disease Strategy."

Phil J. Vickers, Ph.D., Global Head of Research & Development, Shire
"As a company committed to innovative research and clinical development related to specialty conditions and rare diseases, Shire is proud to recognize Canada's contribution in this area. There is a high unmet need for medical advances in rare diseases, and the most effective way to support more innovation -- in Canada and beyond -- is through partnerships and collaboration amongst all stakeholders. This is why Shire is pleased to support the efforts of organizations such as CORD, whose efforts aim for a better future for Canadians living with a rare disease, and their families."

About CORD
CORD is Canada's national network for organizations representing all those with rare disorders. CORD provides a strong common voice to advocate for health policy and a healthcare system that works for those with rare disorders. CORD works with governments, researchers, clinicians and industry to promote research, diagnosis, treatment and services for all rare disorders in Canada. www.raredisorders.ca

About Shire
Shire enables people with life-altering conditions to lead better lives.

Our strategy is to focus on developing and marketing innovative specialty medicines to meet significant unmet patient needs. We provide treatments in Neuroscience, Rare Diseases, Gastrointestinal, and Internal Medicine and we are developing treatments for symptomatic conditions treated by specialist physicians in other targeted therapeutic areas.

About Shire in Canada
Shire Pharma Canada ULC, a subsidiary of Shire, has been providing treatments to Canadians living with life-altering conditions for more than 15 years. The Canadian operations of Shire are located in Saint-Laurent (Montréal), Québec. For more information, please visit: www.shirecanada.com.

References

1 BIOTECanada. The Canadian Rare Disease Therapies Landscape: Bridging Opportunity to Reality. http://www.biotech.ca/en/policy-matters/health-bio/rare.aspx. Accessed November 2015.

2 Canadian Organization for Rare Disorders. Now is the Time: A Strategy for Rare Diseases is a Strategy for all Canadians. Canada's Rare Disease Strategy. http://www.raredisorders.ca//content/uploads/CORD_Canada_RD_Strategy_22May15.pdf. Accessed November 2015.

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