Rareatives is posting this survey on behalf of Joyce Fitz.

You are invited to participate in a research survey directed towards finding a trend between diagnostic odyssey and daily burdens.

Joyce Fitz, the conductor, is a senior high school student currently attending a votech school for health and sciences. She currently is in a research capstone class for her final project in high school. As a rare disease patient and advocate herself, her first instinct was to research the rare disease community.

As many of us know, the average diagnostic odyssey (i.e. the time from symptoms beginning to receiving a confirmed diagnosis) is 6+ years in rare disease patients. Joyce’s goal is to see if there is a connection between waiting longer for a diagnosis and experiencing more mental, physical, and financial burdens in daily life.

This research would help advocates such as Joyce better align advocacy efforts towards helping the rare disease patient community.

This is an anonymous survey, meaning no information tied to your identity will be shared/asked for.

If you would like to participate in the survey, you may do so here.