Harper Government supports research on rare diseases

For immediate release -


Ottawa, Ontario (February 29, 2012) – The Harper Government today announced new research aimed at improving the lives of people with rare diseases. The announcement was made by the Parliamentary Secretary to the Minister of Health, Dr. Colin Carrie, on behalf of the Honourable Leona Aglukkaq, Minister of Health.

"Our Government is committed to improving the quality of life of Canadians," said Dr. Carrie. "Today's announcement is about helping patients and families affected by a rare disease and improving the lives of those living with these conditions."

Dr. Colin Carrie, Parliamentary Secretary to the Minister of Health, announces new research aimed at improving the lives of people with rare diseases, at a conference hosted by the Canadian Organization for Rare Disorders.

The overall objective of the research is to transform fundamental biological research into medical practice and treatments in the area of rare diseases. For example, one team is conducting research on Fabry disease, a rare condition that affects many organ systems and results in a reduced life expectancy. This team will conduct a clinical research trial involving gene therapy, with the ultimate goal of establishing an effective treatment for this disease. In total, nine collaborative research teams will be supported. They will investigate a range of issues related to rare diseases, including basic biological science, health services, and policies.

"CIHR is pleased to support these new research teams," said Dr. Lasko, Scientific Director of the CIHR Institute of Genetics. "This is the first time that Canada has supported interdisciplinary research of this kind, and marks a significant step forward in our country's contribution to this field of study. It is our hope that this research will produce new practices, policies, and treatments that will transform the lives of Canadians living with rare diseases."

"Canada has excellent researchers and we are delighted that they will now have the opportunity to focus on rare diseases," said Dr. Wong-Rieger, President of the Canadian Organization for Rare Disorders. "This CIHR research announcement will help ensure that Canada is contributing to improving the lives of not only Canadians, but all people living with rare disorders. The Canadian Organization for Rare Disorders is pleased to be a partner in supporting the research and a partner in some of the projects."

Dr. Colin Carrie, Parliamentary Secretary to the Minister of Health, stands with Canadian rare disease research advocates.

A rare disease is one that affects a small number of people, when compared to the general population. In general, a disease is considered rare when it affects less than one in 2,000 people. They are often chronic diseases and life-threatening. For many rare diseases, signs may be observed at birth or in childhood, as in proximal spinal muscular atrophy, neurofibromatosis, osteogenesis imperfecta, chondrodysplasia or Rett syndrome. However, more than 50% of rare diseases only appear during adulthood, such as Huntington disease, Crohn's disease, Charcot-Marie-Tooth disease, amyotrophic lateral sclerosis, Kaposi's sarcoma, or thyroid cancer.

Fact Sheet

- 30 -

Further information:
Cailin Rodgers, Office of the Honourable Leona Aglukkaq, 613-957-0200
David Coulombe, Media Relations, Canadian Institutes of Health Research, 613-941-4563
Durhane Wong-Rieger, President, Canadian Organization for Rare Disorders, 416-969-7435

The Canadian Institutes of Health Research (CIHR) is the Government of Canada's health research investment agency. CIHR's mission is to create new scientific knowledge and to enable its translation into improved health, more effective health services and products, and a strengthened Canadian health care system. Composed of 13 Institutes, CIHR provides leadership and support to more than 14,100 health researchers and trainees across Canada.

The Canadian Organization for Rare Disorders (CORD) is Canada's national network for organizations representing all those with rare disorders. CORD provides a strong common voice to advocate for health policy and a healthcare system that works for those with rare disorders. CORD works with governments, researchers, clinicians and industry to promote research, diagnosis, treatment and services for all rare disorders in Canada.

Date modified: