Calculations: Feb. 28 is Rare Disease Day

January / February 2018   Comments

350 million: Estimated number of people worldwide who are living with a rare disease (source)

7,000: Approximate number of rare diseases and disorders (source)

80%: Percentage of rare diseases and disorders that are genetic in origin (source)

35%: Percentage of deaths occurring in a child’s first year that are caused by rare diseases (source)

80%: Percentage of those with a rare disease that falls within a group of approximately 350 diseases (source)

1 in 12: Approximate number of Canadians with a rare disease; 2/3 of these are children (source)

60%: Percentage of treatments for rare disorders that reach Canada (source)

6: Number of additional years it can take for treatments to be approved in Canada, compared to Europe and the U.S. (source)

2008: Year of the first Rare Disease Day (source)

>20%: Percentage of Canadians with a rare disease who reported waiting more than six years for an accurate diagnosis (source)

$700,000: Yearly cost of the drug Soliris, used to treat the life-threatening hemolytic uremic syndrome, which affects fewer than 100 Canadians (source)

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