Advocacy & Awareness

Neurological Health Charities Canada (NHCC)

In 2008, a new coalition, called Neurological Health Charities Canada (NHCC), was formed by most of the VHOs that represent specific neurological disease/disorder groups from across Canada to serve as one voice that will provide a stronger sense of community and influence for positive change.

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.

Background

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 National Population Study of Neurological Conditions

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 a 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.  For specific information on the studies, please visit http://www.mybrainmatters.ca/en/projects .

For ongoing updates on this project see below.

Mandate

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.