CORD Rare Disease Patient Survey

This survey is conducted by the Canadian Organization for Rare Disorders, a registered charity representing patients and patient groups affected by rare disorders. The results of this survey will help us create a composite picture of the experiences of patients and families, for example, awareness of rare conditions, how and how long did it take to get diagnosed, access to specialists, counseling, or other support services, and the impact of a rare condition on your lives. Your story and those of others like you will help us identify what is working in our health and social services for rare diseases, the gaps, and recommendations for making things better in Canada.

In this survey, the term "rare diseases" is used to include all rare disorders, rare conditions, rare cancers, and undiagnosed conditions (probably rare). The survey may be answered by the person living with the rare disease or on behalf of a person currently or previously living with a rare disease. All answers are confidential and individual responses will not be shared with your healthcare provider or any other organization or entity. Results will be presented as a summary. Any quotes or examples will be presented only with the signed approval of the individual. If you have any questions, please contact us at info@raredisorders.ca or 1-877-302-7273.