Ontario All-Party Rare Disease Strategy Roundtable
FebruaryFeb 28 2022 09:30am - 10:30am
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We are entering a new golden age for medical research and technology advancement. Our cumulative knowledge of the human genome and the genetic basis of disease has increased exponentially and coupled with our state-of-the-art capabilities in digital and cellular technology, Ontario is on the cusp of becoming a global juggernaut for innovative research and development that can benefit not only the 1.2 million Ontarians and the 2.8 million Canadians with rare diseases but the nearly 400 million worldwide.
The United Nations Declaration on rare diseases, the WHO inclusion of rare diseases in Universal Health Coverage, and the Canadian government commitment of $500 million a year to a Rare Disease Drug Strategy provide the context for investment in rare disease to generate optimal benefits for patients, the health system and economic development. We can add to the Boston Biotech Hub, the Denmark Biotech Hub now the Ontario Biotech Hub for Rare Diseases that fosters innovative research and excellence for patients.
On Monday, February 28, from 9:30-10:30am (EST), and on the occasion of World Rare Disease Day, Life Sciences Ontario (LSO) and the Canadian Organization for Rare Diseases (CORD) will convene a high-level roundtable featuring Ontario legislators and other notable health policy experts to start a dialogue about how Ontario can harness a provincial rare disease strategy to save lives and boost the provincial economy. The discussion will build on the Blueprint for a Made-in-Ontario Rare Disease Strategy released by LSO last September and the Canadian Rare Disease Strategy that has been championed by CORD since 2015.
DETAILS
- Event title: Ontario All-Party Rare Disease Strategy Roundtable
- Date: February 28, 2022 (World Rare Disease Day)
- Time: 9:30am-10:30am (EST)
- Confirmed participants:
- Moderated by Jane Taber, NATIONAL PR and former national broadcast journalist
- Jason Field, Life Sciences Ontario (LSO)
- Durhane Wong-Rieger, Canadian Organization for Rare Disorders (CORD)
- MPP Natalia Kusendova, Progressive Conservative Party of Ontario
- MPP France Gélinas, New Democratic Party of Ontario
- MPP John Fraser, Liberal Party of Ontario
- Dr. Leanne Ward, Children's Hospital of Eastern Ontario (CHEO)
- Bob McLay, Canadian Forum for Rare Disease Innovators (RAREi)
Supported by:
Rare Disease Day - February 28th
https://www.rarediseaseday.org/
Rare Disease Day is the globally-coordinated movement on rare diseases, working towards equity in social opportunity, healthcare, and access to diagnosis and therapies for people living with a rare disease.
Since its creation in 2008, Rare Disease Day has played a critical part in building an international rare disease community that is multi-disease, global, and diverse– but united in purpose.
Rare Disease Day is observed every year on 28 February (or 29 in leap years)—the rarest day of the year.
Rare Disease Day was set up and is coordinated by EURORDIS and 65+ national alliance patient organisation partners. Rare Disease Day provides an energy and focal point that enables rare diseases advocacy work to progress on the local, national and international levels.
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