Europe's rare disease patients face a mental health care gap, survey finds

Published on

19/06/2026 - 12:50 GMT+2

Rare disease patients and their carers report seven times higher rates of depression and anxiety than the general EU population, with loneliness being up to 20 times more common and suicidal thoughts up to 10 times more prevalent, a survey of nearly 10,000 rare disease patients and their carers across 45 European countries found.

With anxiety levels similar to those observed during the COVID pandemic in the general population, the “findings lay bare the scale of a mental health crisis afflicting Europe’s rare disease community,” said Jessie Dubief, Social Research Director at EURORDIS.

“What makes this especially alarming is that these are not temporary conditions: this is the daily reality for millions of people across Europe, year after year,” she added.