A large-scale survey has revealed that people living with rare diseases and their carers across Europe are experiencing significantly higher levels of mental health struggles, with seven in ten reporting poor mental health and a majority saying they urgently need psychological support.
The findings, published by EURORDIS, the European rare diseases organisation, are based on responses from nearly 10,000 patients and carers across 45 countries. The report highlights what researchers describe as a deep and persistent mental health burden affecting one of Europe’s most vulnerable patient communities.
According to the survey, rare disease patients and their caregivers are seven times more likely to suffer from depression and anxiety compared with the general EU population. Loneliness was reported to be up to 20 times higher, while suicidal thoughts were found to be as much as 10 times more common.
Researchers said the levels of anxiety recorded are comparable to those seen in the general population during the height of the COVID-19 pandemic, underlining the severity of the situation. Jessie Dubief, social research director at EURORDIS, said the results point to a long-term crisis rather than short-term distress.
“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,” Dubief said.
The study also found that nearly three-quarters of respondents required professional psychological support within the past six months. However, only about half were able to access it, leaving a significant gap between need and available care.
Patients cited multiple barriers preventing them from receiving support, including high costs, long waiting times, limited availability of specialists, geographical distance from services, and a lack of clear information on how to access care. Despite these challenges, those who did receive psychological assistance reported improvements in their ability to manage daily life and cope with their conditions.
One respondent in France, speaking anonymously in a EURORDIS statement, said they received no emotional support at all despite seeking help.
EURORDIS chief executive Jean Saslawsky called for mental health to be fully integrated into rare disease care systems, stressing that support must be embedded at every stage of treatment.
“We know what needs to be done: rare disease care must be mental health-informed at every stage,” Saslawsky said.
He added that healthcare systems should take a more proactive approach in identifying psychological challenges early and ensuring patients can access appropriate services without unnecessary delays or obstacles.
The findings have renewed calls for policy changes across Europe to strengthen mental health provision for rare disease patients and their families, as advocates warn that the current system is failing to meet their needs.
