On this International Rare Disease Day, the IRCM (Institut de recherches cliniques de Montréal) and the Regroupement québécois des maladies orphelines (RQMO, Quebec Coalition of Orphan Diseases) announced the establishment of a joint partnership to further research on rare diseases and to provide patients with greater access to medical, community and governmental resources.
A greater proximity between the community and research
Through this agreement, the IRCM now hosts the RQMO’s Rare Disease Information and Resource Centre. This centre provides Quebec patients with assistance, for example in their search for information on a rare disease, on research projects or clinical trials, and refers them to medical, community and governmental resources accordingly to their needs.
Through this new proximity, the RQMO will benefit from being able to consult IRCM experts about rare and orphan diseases. In return, IRCM researchers will be able to get help from the RQMO for the recruitment of patients in research projects on rare diseases.
“This partnership with the RQMO is in alignment with the IRCM’s most recent strategic plan to establish a research centre for rare and genetic diseases in adults, in collaboration with the Centre hospitalier de l’Université de Montréal (CHUM) and the Centre hospitalier universitaire Sainte-Justine. The IRCM’s centre will be the only one of its kind in Canada and will fill a substantial void in the healthcare system regarding the management, monitoring and care of adult patients with rare diseases. The services will include the care and monitoring of these patients who currently have no option to meet their needs,” said Tarik Möröy, President and Scientific Director of the IRCM.
“Our Rare Disease Information and Resource Centre is a powerful rallying point for patients with rare and orphan diseases. Young adults with rare diseases are especially left on their own as for their medical and psychosocial needs. By being close to this new centre at the IRCM, we will be able to better support this population and to involve them more in their own care and in research projects. We are therefore delighted with this outstanding partnership, which will allow adult patients to have a better quality of life with their rare disease,” explained Gail Ouellette, President and Executive Director of the RQMO.
A disease is deemed rare when it affects less than one person in 2,000. While the diseases may be rare, the patients are not, as approximately 8,000 rare diseases exist. Therefore, in total, more than 500,000 people are affected in Quebec; in Canada, this number rises to a total of 2.5 million people. Only a few of these diseases can be treated effectively, so rare diseases represent a significant public health concern.
Today, as major achievements in biomedical research result in better treatments, a growing number of patients with rare diseases reach adulthood. However, our healthcare system has no specific intake services for these patients. Moreover, very little is known about the impact that reaching adulthood has on disease progression and, consequently, on treatment. Pediatricians, patient associations and the MSSS all recognize the importance of setting up clinics for patients with rare diseases who must leave the pediatric environment.
Not only will the IRCM’s initiative provide access to specialized care, but it will also develop a much-needed translational research program to better understand these diseases and ultimately develop innovative treatments.
In addition, the IRCM has begun to implement three important partnerships to support this initiative of a research centre for rare and genetic diseases in adults. The first partner is the CHU Sainte-Justine, which is the largest research and treatment centre in Quebec for rare diseases in children. The second partnership is with the CHUM, which will be instrumental in the implementation of care and treatment of adult patients in Quebec hospitals. Lastly, the third partner is the RQMO, which aims to inform and support patients suffering from a rare disease throughout their lives, to educate the public and the government, and to help further research in this area.
About the IRCM
The IRCM (Institut de recherches cliniques de Montréal) is a renowned biomedical research institute located in the heart of Montréal's university district. Founded in 1967, it is currently comprised of 35 research units and four research specialized clinics: nutrition, metabolism and atherosclerosis; hypertension; diabetes and obesity as well as rare diseases such as cystic fibrosis and familial hyperlipidemia. The IRCM employs nearly 425 people. It is affiliated with the Université de Montréal, and the IRCM Clinic is associated to the Centre hospitalier de l'Université de Montréal (CHUM). It also maintains a long-standing association with McGill University. The IRCM is funded by the Quebec ministry of Economy, Science and Innovation (Ministère de l’Économie, de la Science et de l’Innovation). For more information, visit www.ircm.qc.ca.
About the RQMO
The Regroupement québécois des maladies orphelines (RQMO, Quebec Coalition of Orphan Diseases) brings together rare and orphan disease associations. The RQMO's mission is to provide an information service and support people with rare and orphan diseases and their caregivers through its Rare Disease Information and Resource Centre; to disseminate information on rare diseases; to educate the public and the medical community about rare and orphan diseases; and to further knowledge on the diverse rare and orphan diseases by promoting exchanges between patients and researchers. For information, visit www.rqmo.org.
For more information: