Recognising disabilities and barriers!
30 million people live with a rare disease in Europe. Every day, they face numerous barriers in accessing their social and independent living rights.
Recognising the disabilities they experience and
addressing these barriers is crucial to enable their
full participation in all areas of society.
This Rare Barometer survey, conducted between July and September 2024 and gathering the answers from 9591 participants in Europe, looked into the disabilities of people with
rare diseases and the challenges they face in obtaining
disability recognition and independent living support.
It also explored the limitations they face in participating in society, including at school and work.
Downloads: European results in 25 languages
Please contact the Rare Barometer team for specific queries: rare.barometer@eurordis.org
Cite the factsheet
Faye F., Castro R., Dubief J., Recognising disabilities and barriers! Key findings from a Rare Barometer survey on the impact of living with a rare disease. EURORDIS-Rare Diseases Europe. February 2025.
Cite the dahsboard
Faye F., Castro R., Dubief J., The impact of living with a rare disease: barriers and enablers of independent living and social participation. Dashboard with detailed results of the Rare Barometer survey. EURORDIS-Rare Diseases Europe. February 2025.
Related publications
- Watch the webinar presenting survey results
- Full report in English
- Original questionnaire in English
- Press release: EURORDIS Rare Barometer finds major barriers to disability recognition and social participation
- EURORDIS’ strategy and resources on holistic care