41:1 Bill 174, Rare Disease Day Act, 2016

Harris, Michael

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Bill 174                                                       2016

An Act to proclaim Rare Disease Day

A rare disease, also known as an orphan disease or a rare disorder, is any disease that affects a small percentage of the population. According to the Canadian Organization for Rare Disorders, one in 12 Canadians are affected by rare diseases. Many others are at risk, but remain undiagnosed and unaware of their condition.

There are over 7,000 rare diseases. They are characterised by a broad diversity of disorders and symptoms that vary not only from disease to disease but also from patient to patient suffering from the same disease. Most rare diseases are genetic and are present throughout a person’s entire life, even if symptoms do not immediately appear.

While a Rare Disease Day is officially recognized throughout Europe and in the United States, it is not officially designated in any Province of Canada or by the Government of Canada. It is desirable to officially recognize a Rare Disease Day to raise awareness amongst the general public and decision-makers about rare diseases and their effect on patients’ lives. February 29 is designated as Rare Disease Day in many jurisdictions, but given the rarity of that date, it is appropriate to recognize the last day of February in each year as Rare Disease Day in Ontario.

Therefore Her Majesty, by and with the advice and consent of the Legislative Assembly of the Province of Ontario, enacts as follows:

Rare Disease Day

   1.  The last day of February in each year is proclaimed as Rare Disease Day.

Commencement

   2.  This Act comes into force on the day it receives Royal Assent.

Short title

   3.  The short title of this Act is the Rare Disease Day Act, 2016.

 

EXPLANATORY NOTE

The Bill proclaims the last day of February in each year as Rare Disease Day.

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