Neurological Health Charities Canada (NHCC)
In 2008, a new coalition, called Neurological Health Charities Canada (NHCC), was formed by Voluntary Health Organizations that represent specific neurological diseases/disorders from across Canada in order to serve as one voice to provide a stronger sense of community and influence for positive change for those persons affected by Neurological Diseases.
The NHCC rapidly evolved into an effective organization that has obtained financial support from both the Federal and Ontario governments for two important projects concerning the incidence and management of the disabilities caused by chronic neurological conditions.
Because CNSF and the NHCC have almost identical objectives, the CNSF accepted the invitation to join the NHCC and to channel its current advocacy efforts though that coalition. The CNSF will continue its internal advocacy efforts through its Advocacy Committee.
If you haven’t seen the announcement already, you can see more details here.
Three of the projects relate to brain health:
The McGill University and Western University projects are most immediately applicable to NHCC member organizations. Those institutions have said the projects will work in partnership with each other to extend their reach. The Western University news release stated the funding will “leverage complementary expertise to better understand disorders such as Parkinson’s, Alzheimer’s, traumatic brain injury, and schizophrenia.”
Neurological Health Charities Canada (NHCC) applauds the findings in a landmark report by the Institute on Research and Public Policy (IRPP) including the call for a new and collaborative approach to Canada’s income, disability and employment support systems. To view this full report please visit the following links;
Leaving Some Behind: What Happens when Workers Get Sick - available at www.irpp.org
NHCC – “Day on the Hill” - March 2015
Neurological Health Charities Canada held the NHCC “Day on the Hill” on March 24, 2015 and it was an excellent event. In total there were 28 meetings with Parliamentarians and policy staff. Overall participants reported on the policy paper Canadian Brain Health: Driving Research to Action and the four proposed solutions generated great interest and discussion and enabled the NHCC to get useful advice in moving forward.
Canadian Brain Health: Driving Research to Action is now posted online and available at the following links: http://www.mybrainmatters.ca/en (English) and http://www.mybrainmatters.ca/fr (French).
Landmark study reveals impacts of neurological condition on Canadians.
Canadians with neurological conditions, caregivers and representatives from Neurological Health Charities Canada celebrate the completion of a first of its kind Canadian study
Mapping Connections: An understanding of neurological conditions in Canada
The National Population Study of Neurological Conditions is a 4-year project funded by the Government of Canada. Oversight for the study comes from an Implementation Committee comprised of representatives from the Government of Canada’s health portfolio (Health Canada, CIHR, PHAC) and from the NHCC. The Study was shaped with input from over 3,000 stakeholders across Canada and members of the Canadian neurological research community, of which over 50 individuals gave their time to participate on an Expert Advisory Group. Currently, oversight for the Study is provided by the Implementation Committee and the Scientific Advisory Committee.
On September 24-25, 2012, the Third Progress Meeting of the National Population Health Study of Neurological Conditions (NPHSNC) was held in Toronto, Ontario, Canada. With researchers, the Implementation Committee and the Scientific Advisory Committee present, attendees were provided with informative updates on the work that is currently underway across Canada. Although the NPHSNC involves a suite of projects focused on the incidence and prevalence, impact, risk and health service utilization of our priority conditions, the final culmination of this work will result in a picture of the neurological landscape of Canada.
Mapping Connections was developed and managed as a unique partnership between the Government of Canada and Neurological Health Charities Canada, a collaborative of 24 health charity organizations representing the voice of individuals and families impacted by neurological conditions across Canada.
For specific information on the studies, please visit http://www.mybrainmatters.ca/en/projects
committed to improving the quality of life of Canadians with brain, spinal cord or nerve disorders and injuries
CBANHC, as a coalition, played a lead role from 2003-2008 in the development of an advocacy strategy for patients with neurological disorders, their families, care-givers, and health-care workers.
The Burden of Neurological Diseases, Disorders and Injuries in Canada, published in June, 2007, documented the economic burden (direct and indirect costs) of eleven of the most common neurological conditions and presented estimates of the disability burden inflicted by six of these conditions.
The objectives of the CNSF pertaining to advocacy and leadership are:
To influence public policy in the interests of the patients its members serve, the CNSF will support CBANHC and the NHCC as they strive: To promote greater awareness of the enormous impact of neurological diseases and injuries in Canada;
To work for timely access to cost-effective diagnostic services, comprehensive treatments, and rehabilitation for Canadians with nervous system disease or injury;
To build support for the unique needs of Canadians living with the long-term and often progressive physical and mental disabilities caused by nervous system disease or injury;
To advocate vigorously for increased resources and funding to expand basic, translational, clinical, and outcomes neuroscience research in Canada.
Current plans for the Advocacy Committee may be viewed within the Governance-Committees tab under the Canadian Neurological Sciences Federation page of the Societies section.
Should you have any questions, please contact Dan Morin, CNSF CEO.
According to a 2006 report conducted by the World Health Organization, “a large body of evidence shows that policy-makers and health-care providers may be unprepared to cope with the predicted rise in the prevalence of neurological and other chronic disorders and the disability resulting from the extensions of life expectancy and aging populations globally.”
Despite the enormous impact of the more than 1,000 neurological and psychiatric diseases, disorders and injuries, there is very little understanding of these conditions as one grouping. The lack of detailed data regarding incidence, prevalence and impact of chronic neurological disease and disorders in Canada is a critical barrier to advocating for Canadians affected by these conditions. All neurological disorders share common experiences as well as common links with one another, yet currently, there is no unifying body representing the interests of the neuroscience umbrella as a whole.
To address this issue, a group of neurological disease charities have banned together, forming the Neurological Health Charities Canada (NHCC). The NHCC will warrant more attention as a collective constituency, will be able to expand reach and knowledge of neurological disorders, as well as put neuron degenerative disease on the map with federal policy makers. Founding members include the ALS Society of Canada, Alzheimer Society of Canada, Epilepsy Ontario, Huntington Society of Canada, Multiple Sclerosis Society of Canada, Muscular Dystrophy Canada, NeuroScience Canada, Ontario Federation for Cerebral Palsy, Ontario Neurotrauma Foundation, Parkinson Society Canada, Spina Bifida and Hydrocephalus Association, Tourette Syndrome Foundation of Canada. The CNSF is also a member.
The Neurological Health Charities Canada (NHCC) is committed to advocating for neurological diseases, disorders and injuries. The NHCC will serve as one voice, providing a stronger sense of community and influence for positive change. The NHCC aims to improve the quality of life of those with a neurological disorder through education, advocacy, research and improved methods of diagnosis, treatment and rehabilitation. The NHCC will also position neurological disease as a major chronic disease, focusing on the importance of conducting a nationwide epidemiological study as well as a disease management and prevention strategy for Ontario.
For additional information on the NHCC please visit their web site.
Canadian Neurological Sciences Federation © 2017