COVID-19 and the Rare Disease Community
The COVID-19 pandemic has impacted the daily life of nearly everyone. The rare disease community...
Read MoreThe COVID-19 pandemic has impacted the daily life of nearly everyone. The rare disease community...
Read MoreSherry Caldwell is the mother of a child with chromosome 14q deletion syndrome. In this video...
Read MoreThis week, Health Canada updated their website to include information about the approval process for orphan drugs to treat rare diseases.
Read MoreThis 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.
Read MoreInternational 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.
Read MoreToday, 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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