IRCM welcomes the Quebec Government Rare Disease Policy

IRCM welcomes the Quebec Government Rare Disease Policy

The Montreal Clinical Research Institute (IRCM), which conducts some of the most hopeful research in the field of rare diseases and the care of many patients living with these conditions, welcomes the introduction of the Quebec Government’s Policy on Rare Diseases.

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 in each of their forms affect a relatively small number of people, all together, they represent 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. Most of these individuals are children, whose lives are often threatened by the disease.

The Expertise of the IRCM

The IRCM Centre for Research on Rare and Genetic Diseases in Adults has a long history of advancing knowledge on these orphan diseases. It is looking into several of these serious conditions in order to advance knowledge, with an approach linking fundamental and clinical research. The IRCM is the only place in Canada focusing on the transition from pediatric to adult care for rare diseases, which is a challenge for many families.

Rare Kidney Diseases

The IRCM Rare Kidney Disease Clinic evaluates and treats patients with a variety of kidney diseases including polycystic kidney disease, thrombotic microangiopathies and complement diseases, tubulopathies, tubulointerstitial nephropathies and glomerular diseases. An important part of the clinic’s mission is to care for young patients with kidney disease and to ensure a smooth transition from pediatric to adult care. 

Genetic Dyslipidemias

The purpose of the Genetic Dyslipidemia Clinic is to evaluate and treat patients with rare and severe cases that result in a significant increase in blood cholesterol and/or triglyceride levels that can lead to cardiovascular or pancreatic complications. The clinic staff also collaborates on research projects to improve the screening, diagnosis and treatment of genetic dyslipidemias in order to provide personalized management and reduce cardiovascular and pancreatic complications.

Primary Immunology

The IRCM Primary Immunology Clinic evaluates and treats patients with dysfunctional immune systems that can lead to prolonged, frequent, severe or atypical infections and autoimmune manifestations. 

For more information 


Florence Meney
Communications Director, IRCM
514 755-2516

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