COVID-19 and the Rare Disease Community
The COVID-19 pandemic has impacted the daily life of nearly everyone. The rare disease community...
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Tag: rare disease
Stories
Chromosome 14q Deletion Syndrome
Sherry Caldwell is the mother of a child with chromosome 14q deletion syndrome. In this video...
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Health Canada Defines a Rare Disease – Sort Of
This week, Health Canada updated their website to include information about the approval process for orphan drugs to treat rare diseases.
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Government to Study Barriers to Treatment for Rare Disease Patients
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
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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Ontario’s Plan for Rare Diseases Released
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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