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Caregiving Matters in Rare Diseases. Please share your experience in this survey

February 12, 2019
Please take the time to fill out the CORD experience survey for caregivers.  Please see below for all the details and the link to the survey.
At the Canadian Organization for Rare Disorders (CORD), we are aware that rare disease affects the whole family and extended family and friends. Caring for someone with a rare disease can have numerous impacts, positive and challenging. Most of these impacts are rarely discussed, so they are rarely addressed.
CORD, in collaboration with NATIONAL Public Relations and with funding from Vertex Pharmaceuticals (Canada) Incorporated, has developed a survey to collect the experiences of living with a rare disease and the impacts on both patients and caregivers. As a member of our are disease community, we are hoping you will take a few minutes to share your perspectives in this survey.
The data collected from the survey will be used by CORD and its affiliates to support advocacy for health policy and healthcare system changes that improve the lives of rare disease patients and their caregivers.
The survey should take no longer than 15 minutes and all responses will remain fully confidential.  No responses will be individually identified; only summarized data will be available.
To complete the survey, please click the link below. You have until 19 February to provide your response.

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