Participate in Our Patient Impact Survey!
Help Scleroderma Canada develop its advocacy and awareness efforts by completing our new comprehensive patient impact survey. We hope to use the data collected through this comprehensive survey to shed light on the physical, social, financial, and psychological impacts of Scleroderma on Canadians living with the disease. In addition to this, Scleroderma Canada is also looking to use this data to evaluate its strategic goals and priorities to ensure the success of our organization in meeting our mission.
Why complete this survey?
You're lived experience can help us to gain valuable information about the socioeconomic impacts of scleroderma. This information will be used to structure our goals and advocacy efforts as an organization. The results of this survey will also be turned into a easy to read report which will be an important advocacy tool for Scleroderma Canada as we work towards promoting public awareness, education, and supporting those affected by Scleroderma through active and meaningful engagement with policy across Canada as it relates to the needs of those living with scleroderma.
Advocacy efforts help to raise awareness among the public and healthcare professionals. Disease awareness can aid with early disease detection, reducing public stigmas or misconceptions, and empowering patients.
Advocacy also helps to build networks for patients and families, offering emotional support, advice, and sense of community. These efforts can also lead to greater public and private investment in research efforts for scleroderma. This research is essential for developing new treatments, improving diagnostic tools, and understanding the underlying causes of disease. Finally, disease and patient advocacy can drive policy change. This includes policies that benefit scleroderma patients such as access to affordable medications or improved patient support systems.
Why is advocacy so important?
Advocacy efforts help to raise awareness among the public and healthcare professionals. Disease awareness can aid with early disease detection, reducing public stigmas or misconceptions, and empowering patients.
Advocacy also helps to build networks for patients and families, offering emotional support, advice, and a sense of community. These efforts can also lead to greater public and private investment in research efforts for scleroderma. This research is essential for developing new treatments, improving diagnostic tools, and understanding the underlying causes of disease. Finally, disease and patient advocacy can drive policy change. This includes policies that benefit scleroderma patients such as access to affordable medications or improved patient support systems.
Why is Scleroderma Canada conducting this survey?
​Given the direct role that non-profits play in health policy through their advocacy efforts and their responsibility to provide resources for patients it is essential that we recognize our responsibility to elevate patient voices. Many health organizations and non-profits engage patients through studies and surveys which explore the impacts of disease. The results of these surveys represent these patient values, elevate patient voices and can be used to guide organizations such as Scleroderma Canada in their mission statements.
To participate in our survey please CLICK HERE. If you have any questions, please email karol@scleroderma.ca or call the office at 905-544-0343.
Please note this survey is completely anonymous. CLICK HERE for copy of our research proposal.