Improve Our Mental Health! June 2026
30 million people live with a rare disease in Europe. Alongside their families, they face physical and practical challenges but also a significant psychological burden. Recognising the rare disease community as a vulnerable population in mental health strategies is essential to deliver the care they need.
This Rare Barometer survey, conducted between September and December 2025 and gathering the answers from nearly 9,900 participants in Europe, looked into the mental health of people living with a rare disease and their family members, assessing self-reported symptoms of depression, anxiety, loneliness and suicidal ideation.
It highlighted the high levels of emotional distress experienced by the rare disease community, underlining the urgent need to better integrate mental health into rare disease care and policy.