EURORDIS Rare Barometer finds major barriers to disability recognition and social participation
February 202513 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:
This survey provides ground-breaking evidence that most people with rare diseases – eight out of ten – live with disabilities. However, many struggle to have their disabilities recognised and to access the support they need. For the first time, we have data confirming just how widespread these challenges are. The results also reveal the significant barriers people living with a rare disease face regarding social participation, from limited inclusion in education for children and adolescents to higher unemployment rates among working-age adults. These data reinforce the urgent need for action to improve the lives of the 30 million Europeans living with a rare disease.
Raquel Castro, Social Policy and Initiatives Director at EURORDIS, emphasised the urgency of policy change:
The results clearly show that people with rare diseases live with diverse, complex, and often invisible disabilities, and face numerous barriers every day. With over half of respondents finding it difficult to access publicly funded support, it is evident that current systems are failing to meet their needs. While national welfare systems have a primary responsibility to provide such services, the next phase of the European Strategy for Persons with Disabilities must also include concrete actions to support EU countries with improving disability assessment and recognition systems, as well as independent living support.
We also urge the European Commission to ensure that the upcoming review of the European Pillar of Social Rights Action Plan tackles the remaining employment and education gaps, to ensure that the 30 million people living with rare diseases in Europe can fully participate in society on an equal basis with others.
One survey respondent from Germany described the emotional toll of struggling to access essential support:
I was made to feel that, despite being completely disabled, I was able to cope with my everyday life on my own and was therefore not seriously disabled or in need of care. It is humiliating, that I am not believed, that I have to prove how bad I am, that I feel as if I am a welfare parasite. What this does to me psychologically is hard to describe.
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%.
Download PDF
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