Only 13% of people aware of rare disease could correctly identify condition

Only 13% of people aware of rare disease could correctly identify condition

Ross and Caitriona McCarthy are parents to four-year-old Cian who lives with NARS1, an ultra rare neurological condition only discovered in 2021 (Julien Behal/PA)

Only 13% of people who claim to have an awareness of the term “rare disease” could correctly identify a condition, a survey has revealed.

The results of the survey reveal a disparity between awareness and understanding of rare diseases in Ireland.

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