Genome Canada is pleased to announce a partnership with the ERA-NET consortium “E-Rare-3” and participation in the 2015 "European Research Projects on Rare Diseases" Joint Transnational Call.
We are also pleased to be working with CIHR, Fonds de recherche du Québec – Santé and our Voluntary Health Organization partners, Ataxia of Charlevoix-Saguenay Foundation, Cystic Fibrosis Canada and Muscular Dystrophy Canada, to maximize Canadian participation in this exciting initiative that complements our efforts to support and advance research in the area of rare diseases.
Our joint participation in this program will provide Canadian investigators the opportunity to work with their European colleagues to build interdisciplinary, multilateral research projects leveraging complementarities and sharing of expertise as well as resources, with a focus on translational research. The successful projects, aligned with the International Rare Diseases Research Consortium (IRDiRC) objectives, will collectively aim to achieve the ambitious goal of delivering, by 2020, 200 new therapies for rare diseases and diagnostic tests for all rare diseases.
There are at least 6,000 to 7,000 distinct rare diseases, the great majority being of genetic origin. Although individually rare, taken together rare diseases affect at least 26-30 million people in Europe. In Canada, 1 in 12 Canadians have a rare disorder. Moreover, they represent a major issue in health care: a large number of these diseases lead to a significant decrease of life expectancy and most of them cause chronic illnesses with a large impact on quality of life and the healthcare system.
Research on rare diseases is needed to provide knowledge for prevention, diagnosis and better care for patients. Yet, this research is hampered by a lack of resources at several levels. Leveraging resources and coordinating research efforts are key elements for success in the rare diseases field. Rare diseases is a research area that can strongly benefit from collaboration on a transnational scale due to the limited number of patients and difficulty gathering the necessary cohorts due to the scattering of patients over large geographic areas, scarcity of knowledge and expertise, and requirement for cooperative and interdisciplinary approaches to study complex clinical phenotypes.
For more information, please consult the E-Rare JTC 2015 – Call text and guidelines for applicants at this link: http://www.erare.eu/joint-call/7th-joint-call-european-research-projects....