EURORDIS Rare Barometer finds major barriers to disability recognition and social participation
13 February 2025, Paris – EURORDIS-Rare Diseases Europe has released key findings from its latest Rare Barometer survey revealing widespread barriers faced by the 30 million people living with rare diseases in Europe in their daily lives.
From inadequate recognition of disabilities to limited access to support, the survey highlights significant obstacles that prevent people with rare diseases from fully participating in education, employment, and other areas of society.
Conducted between July and September 2024, the Rare Barometer survey gathered responses from 9,591 individuals in Europe across 43 countries, representing 1,643 rare diseases.
Speaking about the survey’s findings, Fatoumata Faye, Survey Project Manager for the Rare Barometer Programme, said:
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Raquel Castro, Social Policy and Initiatives Director at EURORDIS, emphasised the urgency of policy change:
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One survey respondent from Germany described the emotional toll of struggling to access essential support:
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Key findings from the survey
1. Most people with rare diseases live with disabilities:
- 8 out of 10 people with rare diseases live with disabilities.
- They live with diverse and complex disabilities, oftentimes with multiple disabilities.
- 80% experience pain or fatigue, and 70% live with invisible disabilities, which can be harder to recognise.
- 64% of respondents have disabilities that are progressive or dynamic, fluctuating during episodes.
2. Their disabilities are not adequately recognised:
- 57% of respondents have 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.
3. Access to support is limited and difficult:
- 53% of respondents found it difficult or very difficult to obtain publicly funded support, mostly due to: complex or lengthy application processes (42%); a lack of recognition of their disabilities (34%) or; Inadequate information about the application process (29%).
4. Limited participation in education and work:
- 79% of students living with rare diseases experience restricted participation in school.
- The unemployment rate among people living with rare diseases is 23%, nearly four times higher than the 2023 EU’s general unemployment rate of 6.1%.
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About EURORDIS-Rare Diseases Europe
EURORDIS-Rare Diseases Europe is a unique, non-profit alliance of over 1,000 rare disease organisations from 74 countries that work together to improve the lives of the 30 million people living with a rare disease in Europe. By connecting people, families, and rare disease groups, as well as by bringing together all stakeholders and mobilising the rare disease community, EURORDIS strengthens the patient voice and shapes research, policies, and services.
About Rare Barometer
Rare Barometer is the survey programme run independently by EURORDIS-Rare Diseases Europe and is a not-for-profit initiative. It conducts regular studies to identify the perspectives and needs of the rare disease community in order to be their voice within European and International initiatives and policy developments. Rare Barometer brings together more than 20,000 people living with a rare disease or family members to make the voice of the rare disease community stronger.
Contact
Julien Poulain
Communications Manager
EURORDIS-Rare Diseases Europe
Julien.poulain@eurordis.org
+33 6 42 98 14 32