ERN-EuroBloodNet results from the Eurordis Rare Barometer survey on the mental health of people with rare diseases
Insights from 87 participants from ERN-EuroBloodNet representing 27 rare hematological diseases across Europe
The EURORDIS Rare Barometer survey on mental health and wellbeing explored the experiences of people living with a rare or undiagnosed condition and their family members, with the aim of better understanding the psychological impact of rare diseases and the support available to those affected. Conducted between September and December 2025, the survey gathered responses from more than 10,700 participants worldwide, including nearly 9,900 from across Europe, making it one of the largest surveys ever carried out on mental health in the rare disease community.
ERN-EuroBloodNet is pleased to share the tailored results for the rare hematological disease community, providing specific insights into the experiences of people living with rare haematological diseases and their families.
87 participants from the ERN-EuroBloodNet community, representing 27 rare hematological diseases across 25 European countries, contributed to these tailored findings.
Based on responses from participants across Europe, the tailored findings show that six in ten participants reported poor mental health, underlining the urgent need for better access to psychological support for people living with rare haematological diseases and their families.
Read the ERN-EuroBloodNet tailored factsheet to discover the key findings for the rare hematological disease community, and explore the full EURORDIS Rare Barometer report for the complete European results, available in 25 languages.