This week, MP John Oliver (Liberal– Oakville) introduced a motion during a Standing Committee on Health meeting that could provide a stronger voice for the rare disease community. The motion was passed without debate.
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International Pompe Day is April 15. It’s a day that patients and families affected by Pompe disease can celebrate. Not because they’re affected, but because they know they are. The vast majority of the people with Pompe disease remain undiagnosed.
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Today, the Ontario Government stated they plan to implement some of the recommendations listed in their Rare Diseases Working Group Report which originally listed 19 recommendations.
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