FOR IMMEDIATE RELEASE – Friday, January 31, 2020
Toronto, Ontario – A new partnership between Muscular Dystrophy Canada (MDC) and the Canadian Institutes of Health Research (CIHR) announces the creation of a new neuromuscular network in Canada.
Led by Dr. Hanns Lochmüller, NMD4C is an integrated research network for patients, scientists, and clinicians to improve outcomes and access to therapies for patients with neuromuscular disorders in Canada.
“We’re absolutely delighted to receive this catalyst funding for our NMD4C network. Because neuromuscular diseases are individually rare, but collectively affect many children and adults across Canada. Working together, pooling expertise and developing shared infrastructure at a national level is essential if we want to make rapid progress towards giving all Canadian patients world-class care and develop new treatments. This is a fantastic opportunity for doctors, researchers and the patient community to come together to do just that, and we can’t wait to get started,” stated Dr. Lochmüller.
The goals of the new NMD4C network are to:
- Build and sustain a new network of neuromuscular disorders stakeholders to make it easier for Canadian researchers, clinicians and patient advocates to improve research and care.
- Train and educate the next generation of neuromuscular disorder-specific clinicians, scientists, and patient advocates to improve the quality of care and research.
- Raise the standard of care for neuromuscular disorders and access to therapies across Canada, by developing and providing the right information, to the right audience, at the right time.
- Expand access to research resources and build research capacity by uniting local efforts across Canada and linking to international activities.
“This is such an exciting time in the neuromuscular space. There are so many new treatments and trials coming to Canada, and we want to ensure a coordinated approach with the medical community on behalf of the thousands of clients and families we support,” added MDC CEO, Barbara Stead-Coyle.
“The Canadian Institutes of Health Research is committed to improving the health of Canadians and partnerships between patients, charities such as Muscular Dystrophy Canada, industry partners and investigators. Kudos to Muscular Dystrophy Canada for decades of providing wonderful service for Canadians,” said Dr. Karim Khan, Scientific Director, CIHR Institute of Musculoskeletal Health and Arthritis.
In addition to helping fund this three-year grant, MDC will be an equal partner to the NMD4C network and serve as the knowledge translation lead. MDC will be responsible for the coordination and management of knowledge translation activities.
The goal is to raise the standard of care for neuromuscular disorders by developing, disseminating, and implementing clinical care guidelines tailored to different audiences; using a variety of methods to share knowledge with individuals impacted by neuromuscular disorders, clinicians, and researchers about network activities, clinical trial opportunities, and educational and training events.
In line with our goal of increasing the understanding and awareness for neuromuscular disorders, MDC is very happy to be organizing its first-ever nation-wide Neuromuscular Conference set for November 7-8, 2020 at the Sheraton Centre in Toronto. Registration and full website will open in the spring.
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You can visit the Neuromuscular Network at neuromuscularnetwork.ca
ABOUT MUSCULAR DYSTROPHY CANADA
Muscular Dystrophy Canada’s mission is to enhance the lives of those impacted with neuromuscular disorders by continually working to provide ongoing support and resources while relentlessly searching for a cure through well-funded research. To learn more about Muscular Dystrophy Canada, please visit muscle.ca or call our toll-free number at 1-800-567-2873.
MEDIA CONTACTHeather Rice
Muscular Dystrophy Canada