The European patient organisation EURORDIS is calling for greater attention to the mental health and wellbeing of people living with rare diseases and their families. In addition to the physical impact of a rare disease, patients and family members often experience a significant and long-term psychological burden, including anxiety, depression, loneliness, uncertainty, and social isolation. However, mental health is still insufficiently integrated into rare disease care.
Why is this important?
People living with a rare disease often experience:
- Years of uncertainty before receiving a diagnosis;
- A chronic and unpredictable condition;
- Limited treatment options;
- Feelings of being misunderstood and isolated;
- Financial and practical challenges;
- Concerns about the future, employment, education, and family life.
These challenges affect not only patients themselves but also parents, partners, siblings, and other caregivers who support them.
Research (Rare Barometer)
The latest Rare Barometer Survey (2025), which included responses from nearly 9,900 people across Europe, shows that the mental health burden among people living with rare diseases and their families is substantial:
- Around 7 in 10 patients and family members rate their mental health as poor;
- Three quarters reported needing psychological support during the previous six months;
- Depression, anxiety, loneliness, and even suicidal thoughts occur much more frequently than in the general population;
- Only around half of those who needed psychological support actually received it.
Main Challenges
EURORDIS identifies several reasons for the lack of adequate mental health support:
- Long waiting lists;
- High costs of psychological care;
- Limited availability of specialised healthcare professionals;
- Insufficient knowledge about rare diseases within mental healthcare services;
- Mental health is not yet consistently integrated as a standard component of multidisciplinary rare disease care.
What Does EURORDIS Aim to Achieve?
EURORDIS advocates for:
- Making mental health and wellbeing a standard and integrated part of care for people living with rare diseases;
- Ensuring that psychological support is available from the moment of diagnosis and throughout the entire disease journey;
- Improving the training of healthcare professionals so they can better recognise and address psychosocial challenges;
- Ensuring that policymakers recognise people living with rare diseases as a vulnerable population within national and European mental health strategies;
- Actively involving patient organisations in the development of policies, services, and support programmes.
Conclusion
The central message of EURORDIS is that high-quality care for rare diseases is not only about medical treatment, but also about mental health and wellbeing. Without structural attention to psychological wellbeing, the quality of life of millions of Europeans living with a rare disease and their families remains under significant pressure.
EURORDIS therefore calls for mental health and wellbeing to be fully integrated into all healthcare approaches, support services, and policy programmes for rare diseases.
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