EURORDIS – Rare Diseases Europe’s recently published report presents the 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 over 10,000 people living with a rare disease and their family members worldwide. The majority of respondents, over 9500, were living in Europe, and together they represented more than 1,600 different rare conditions, reflecting the wide diversity of the rare disease community.

Survey results show that:

• 8 in 10 people with rare diseases live with disabilities. Such disabilities tend to be diverse, complex and often fluctuating among sensory, motor, cognitive, and fatigue-related.
• Recognition of disability remains patchy, with only57% of respondents which have ever undergone a formal disability assessment. Among them, one in three did not obtain the outcome they expected. This is 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. For a further 15%, an assessment was needed but never received.
• More than half of those surveyed (53%) found it difficult or very difficult to obtain publicly funded support. This includes personal care, mobility aids, financial help or assistive technology.  
• 58% experienced discrimination related to the rare disease or disability.
• When it comes to employment, the disparity remains stark: 23% of people with rare diseases are unemployed, compared to an EU average of 6.1% in 2023. Limited social participation, inadequate support and discrimination all weigh in.

In short, the report takes a fresh look at the everyday challenges faced by people living with rare diseases and their families across Europe: persistent under-recognition of disability, gaps in public support, and unequal participation in work and society.

Read the full report