Thank you very much, Mr. Chair and committee members, for the opportunity to be back before this committee on behalf of the Canadian Organization for Rare Disorders, Canada's national association of over 100 rare disease patient organizations, representing approximately 2.8 million Canadians affected by rare diseases, many of whom have underlying respiratory, cardiovascular and immunosuppressive conditions that put them at high risk for COVID-19.
First of all, I really would like to state without reservation that CORD joins with all Canadians in the fight against COVID-19 and strongly supports the federal, provincial and territorial government actions to protect and treat all Canadians during this pandemic. We empathize with all of those who are suffering. No one knows this more acutely than the rare disease community.
The rare disease community knows the frustration of being unable to get an accurate diagnosis. In fact, it can take seven years or more for a rare disease patient to get a diagnosis. We know the uncertainty of not knowing whether your condition will progress to a serious life-threatening stage. This is the reality for many rare diseases, most of which have highly varied and uncharted disease progression pathways.
Our community knows the urgent need to have a better understanding of a disease. Sadly, many rare diseases cannot be traced to a single virus but have multiple causative factors. We know the despair of having no treatment or cure. In fact, only 5% of rare diseases have any effective therapies, and only a handful can be cured. Finally, we share in that desperate wish to prevent the disease.
CORD applauds the global multisectoral—