The findings of the latest Rare Barometer survey shed light on the real-life challenges faced by people living with rare diseases across Europe. With nearly 10,000 respondents across 43 countries, including 147 individuals living with rare uro-recto-genital conditions, this extensive study offers critical insight into the everyday barriers and discrimination experienced by those affected.
The Rare Barometer programme, run independently by EURORDIS-Rare Diseases Europe, regularly gathers data from the rare disease community to support advocacy and inform policy at both national and international levels. This most recent survey focused on the impact of rare diseases on daily life, with tailored results now available for the ERN eUROGEN community.
Living with Disabilities: A Common Experience
According to the Washington Group Short Set on Functioning (WGSS), 76% of respondents with rare uro-recto-genital conditions live with disabilities, experiencing difficulty with activities such as walking, seeing, hearing, or remembering. Over half reported limitations in at least two domains of functioning, highlighting the complex and multifaceted nature of disability in this group.
While the European average across all rare diseases is even higher at 87%, the findings for the ERN eUROGEN group remain stark, confirming that disability is a significant component of the lived experience of rare urogenital conditions.
Employment Inequality and Barriers to Support
The survey also revealed a marked disparity in employment. Among ERN eUROGEN respondents aged 16–64, 17% reported being unemployed—a figure considerably higher than the general EU unemployment rate of 6.1%. Many individuals with rare diseases are unable to access the labour market due to health-related barriers, compounding the challenges they face.
Access to publicly funded support remains another key issue. Nearly half (47%) of ERN eUROGEN participants reported difficulty in obtaining state-provided support such as personal care assistance, mobility aids, or financial help. This compares to 53% across the wider European cohort, underlining a Europe-wide need for more equitable and accessible support systems.
Discrimination and Unequal Participation
Perhaps most striking is the extent to which people living with rare uro-recto-genital diseases feel excluded from full participation in society. 63% of respondents reported facing discrimination related to their condition or disability—whether in healthcare, employment, education, housing, or public accommodations. This figure is even higher than the 58% reported across all rare diseases in Europe.
These statistics serve as a powerful call to action for healthcare providers, policymakers, and society at large to address the systemic barriers still faced by people with rare diseases.
Explore the Data
ERN eUROGEN stakeholders can explore the tailored dashboard with full results for our disease area here: http://tiny.cc/RB_DailyLife_eUROGEN and/or download the summary factsheet here.
For comparison, European-wide results are accessible in 25 languages at tiny.cc/RB_DailyLife_Results, and the full report in English will be published soon at tiny.cc/RB_DailyLife.
A recording of the webinar presenting the European results is also available on YouTube.
We are grateful to all the patients and families who participated and to Rare Barometer for amplifying their voices. By understanding the lived experiences of people with rare diseases, we can take meaningful steps toward a more inclusive and equitable Europe.
