Thank You for participating in our Patient Impact Survey!
You've helped 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.​
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Please note that this survey was completely anonymous.
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.
Interested in reading our Research Proposal?
Patient Impact Survey Results
The Patient Impact survey was completed between August of 2024 and January of 2025. The goal of the survey was to assess the physical, social, financial, and psychological impacts of living with scleroderma. Exploring these impacts of disease in a Canadian context will ultimately update the influence of scleroderma disease burden and help to give a voice to those most impacted by disease. Therefore, enabling organizations such as Scleroderma Canada to direct funding, support efforts, and steer research strategies.
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Participant demographics were as follows:
If you have any questions, please email karol@scleroderma.ca or call the office at 905-544-0343.