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Centre de recherche
Monday, June 1 2015
Press release

A $6.5-million Canadian Foundation for Innovation funding for CHU Sainte-Justine and Université de Montréal

From gene discovery to treatment of rare diseases and cancers in children in adolescents

MONTRÉAL, June 1, 2015 – The honourable Ed Holder, Minister of State (Science and Technology), announced Friday investment for new research infrastructure through the Canadian Foundation for Innovation, that Canadian researchers across the country will use to advance knowledge. An amount of $6.5-million was allocated to CHU Sainte-Justine and Université de Montréal, partners on the Research Program for Rare Pediatric Diseases RaPiD, a transcanadian pipeline for the discovery, disease phenotyping and mechanism identification, as well as identification of efficient treatment approaches for pediatric rare diseases and cancers, to be conducted in collaboration with University of Ottawa, the Children’s Hospital of Eastern Ontario, Dalhousie University and University of British Columbia.

“For children and adolescents with rare diseases or cancers, the first and foremost need is to be diagnosed and adequately cared for,” said Jacques Michaud, paediatrician, geneticist and principal investigator of the RaPiD initiative at CHU Sainte-Justine and professor in the Department of Pediatrics at Université de Montréal. “Until now, 50% of patients with rare diseases had no diagnosis at all. This new funding will enable us to accelerate the discovery of genes specifically responsible for each of these approximately 7000 different conditions, and to increase dramatically the pace of treatment development,” he continued. Among the rare diseases specifically investigated at CHU Sainte-Justine are brain development disorders including genetic forms of epilepsy and intellectual disability, rare heart diseases and pediatric cancers such as acute lymphoblastic leukemia.

The announced federal funding is pivotal in consolidating genomics research at CHU Sainte-Justine, which is responsible for the diagnosis and treatment of a majority of the most serious childhood diseases in Quebec. It will also help enhance the genomics and bioinformatics core facilities of Génome Québec and CHU Sainte-Justine Integrated Clinical Genomic Center in Pediatrics, and be an invaluable resource for CHU Sainte-Justine Center for Rare Genetic Disorders. These facilities will support genome sequencing and identification of disease causal genes, development of cell models and model organisms for understanding the mechanisms underlying these rare diseases and personalized treatment approaches for the benefit of patients with rare diseases from all over Canada. This infrastructure will support the work of many researchers at CHU Sainte-Justine and of those working in the other institutions forming the RaPiD network.

It is estimated that some 500,000 Canadians collectively have one in about 7,000 rare diseases, for which only approximately 400 therapies are available. Two-thirds of rare diseases are serious and disabling, with over half of them being life-limiting, and 80% appearing early in life. About 30% of children with rare diseases will die before their fifth birthday.

Media contact:

Mélanie Dallaire (French-speaking media)
Senior Advisor, Media Relations, CHU Sainte-Justine
514 345-7707 (direct line)
514 415-5727 (media pager)

William Raillant-Clark (International and English-speaking media)
International Press Attaché, Université de Montréal 
514 343-7593

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Communications, Centre de recherche du CHU Sainte-Justine

Persons mentioned in the text
About CHU Sainte-Justine Research Center

CHU Sainte-Justine Research Center is a leading mother-child research institution affiliated with the Université de Montréal. It brings together more than 180 research investigators, including over 90 clinicians, as well as 350 graduate and post-graduate students focused on finding innovative prevention means, faster and less invasive treatments, as well as personalized approaches to medicine. The Center is part of CHU Sainte-Justine, which is the largest mother-child center in Canada and second most important pediatric center in North America. More on research.chusj.org

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Updated on 6/1/2015
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