Eurordis - Rare Disease Europe

Cite this report

This report presents the European results of the survey ‘The impact of living with a rare disease: barriers and enablers of independent living and social participation’, conducted by Rare Barometer. This study gathered the views of 10,478 people living with a rare disease and family members worldwide, 9591 of whom were living in Europe with more than 1,600 distinct rare diseases, hence representing the diversity of the rare disease community. Survey results show that:

• 8/10 people with rare diseases live with disabilities, and a majority live with diverse and complex disabilities.
• Their disabilities are not adequately recognised: 57% of participants had undergone a disability assessment, and among them, one in three did not obtain the outcome they expected, mainly because they were given a lower grade or percentage of disability than expected, their needs were underestimated, or they did not obtain formal recognition of their disabilities. 15% needed a disability assessment but had not received one, leaving them behind.
• 53% found it difficult or very difficult to obtain publicly funded support such as attendant care support, home support, financial support, assistive technology, mobility aids or other support.
• 58% experienced discrimination related to the rare disease or disability in healthcare, in employment, in education, in housing, in public accomodations or in other places.
• 23% are unemployed, while the unemployment rate in the general population of the European Union was 6.1% in 2023.  

Fatoumata Faye, EURORDIS-Rare Diseases Europe (background literature search, survey design, statistical analyses, report writing)

Raquel Castro, EURORDIS-Rare Diseases Europe (contribution to survey design and to the report)

Jessie Dubief, EURORDIS-Rare Diseases Europe (contribution to survey design and to the report)

Rare Barometer is a not-for-profit survey initiative run independently by EURORDIS-Rare Diseases Europe. This survey was fully supported by EURORDIS-Rare Diseases Europe.