About 2.5 million Canadians have a rare disease, and the majority of these individuals are children. Rare diseases are hard to diagnose because many people, including some healthcare providers, aren’t familiar them. Because of this, parents and caregivers of children with rare diseases face many challenges when trying to find a diagnosis for their child. Past research tells us that parents want more information and support from their healthcare providers and would like to be connected with other families who have gone through a similar journey to diagnosis. However, we are still missing information from Canadian parents and caregivers at a larger scale. We also do not know how demographic factors like background, location, level of schooling, and other factors might affect the experience of parents and caregivers. In our study, we hope to focus on Canadian parents and caregivers who have gotten a rare disease diagnosis for their child, or are still trying to find a diagnosis. We want to learn about their experiences with healthcare providers, how they handle finding and/or getting a diagnosis for their child, where they get support and information from, and how different factors like location, background, or level of schooling might affect their experiences. This study could help us understand the needs and challenges that parents face, and it might also help us create better resources for them. It will show us how different parents’ needs are in the Canadian healthcare system.
