International Rare Disease Day

International Rare Disease Day

Half a million patients to remember

On the occasion of International Rare Disease Awareness Day, now in its 16th year, the Montreal Clinical Research Institute (IRCM), home to some of the most hopeful research in the field, would like to remind everyone of the importance of not leaving behind the thousands of patients suffering from so-called orphan diseases. 

The IRCM welcomes the introduction, last June, of the first policy on rare diseases in Quebec, an initiative that opens the door to better knowledge and care for people living with these often difficult-to-diagnose conditions.

A disease is considered rare when it affects less than one person in 2000. There are more than 7000 different rare diseases. Although, as the name suggests, rare diseases affect a relatively small number of people in each of their forms, taken together, they place a heavy human and economic burden on a significant portion of the population. In fact, it is estimated that in Quebec alone, about half a million people are affected by a rare disease. In Canada, we are talking about more than 2.5 million people. A majority of these individuals are children. Up to 80% of rare diseases are genetic. 

These diseases include autoimmune, infectious, toxic, malformative diseases and some cancers.


Did you know?
There are more than 7000 different rare diseases in the world.


The expertise of the IRCM
The IRCM's Centre for Research on Rare and Genetic Diseases in Adults has a long history of advancing knowledge of these orphan diseases. It is working on several of these serious conditions in order to advance knowledge, with a view to linking research and the clinic. 

The IRCM is the only place in Canada where the focus is on the transition from pediatric to adult care for rare diseases.

For more information: 
Research Centre on Rare and Genetic Diseases in Adults

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