International Rare Disease Day: Half a million patients not to be left behind

International Rare Disease Day: Half a million patients not to be left behind

On the occasion of International Rare Disease Awareness Day, now in its 15th year, the Clinical Research Institute of Montreal (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. 

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, whose lives are often threatened by the disease.

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.

Rare Kidney Diseases

The 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 mission of the clinic 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 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
Director of Communications IRCM
514 755-2516

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