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

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.

Hampered access to mental health professionals

Nearly three-quarters of respondents said they needed professional psychological support in the past six months. Despite the prevalence, only about half received it.

“In reality, I did not receive any emotional support,” one person living with a rare disease in France said in a EURORDIS press release without disclosing their name

Barriers to accessing care included costs, long waiting lists, distance from services and a lack of information on how to seek support. Among those who did receive psychological care, most said it helped them better manage daily life and cope with their condition.

“We know what needs to be done: rare disease care must be mental health-informed at every stage,” EURORDIS chief Jean Saslawsky said.

“Care systems must proactively recognise the mental health challenges facing our community and make it easier to find and access the right support,” Saslawsky said.