Researchers at the University of Manitoba are surveying the experience of caregivers of children with rare genetic diseases in Canada!
Canadian caregivers are still hugely understudied in the rare disease community despite the fact that they contribute so much and have such unique experiences.We hope to better understand the diagnostic journey from the caregiver perspective and how to better support caregivers from all backgrounds across the country.
How you can help:
1. Fill out our prescreening survey (redcap.link/rd-caregiver) to determine if you are eligible for our main survey. If you are eligible, our main survey will take 15-20 minutes to complete online.
2. Share this opportunity with others in your circle! We need to reach as many Canadian caregivers as we can to best understand the experience, needs, and preferences of caregivers!
All study materials are also available in French and simplified Chinese.
*Please note that your child does not need to have a confirmed molecular diagnosis to participate, as long as they have gotten a genetic test after 2018!
See our recruitment poster (attached) for more information! Or reach out to Vivien directly at truongv2@myumanitoba.ca with any questions