Blog post by Raquel Castro, Social Policy and Initiatives Director at EURORDIS-Rare Diseases Europe.
Most people with rare diseases live with disabilities, which are often not recognised. Like others with disabilities, people with rare diseases face significant barriers to access the support they need to live independently. Their participation in education, employment and in the community is also substantially limited.
How many people with rare diseases live with disability? And why aren’t they all recognised as persons with disabilities? How limited is their participation in society? And what needs to change for them to live their lives to the fullest?
The answers lie in the voices of those living with rare diseases, captured through the latest survey conducted by EURORDIS-Rare Diseases Europe.
The majority of people with rare diseases live with disabilities
The survey shows that 8 out of 10 people with rare diseases live with disabilities. All together they live with a variety of disabilities, which are often invisible or dynamic, fluctuating over time.
Many live with multiple disabilities. For example, 7 out of 10 people with rare diseases have difficulties in at least two of the following: seeing, hearing, walking, remembering, self-care and communication. And the majority regularly experiences pain or fatigue.
Their disabilities and needs are not adequately recognised
Some people with rare diseases need a disability assessment but cannot get one. And among those who do, one out of three do not get the results they expected, mainly because:
- Their disabilities were given a lower grade or percentage than expected (61%).
- Their needs were underestimated (52%).
- Or they did not obtain any recognition of their disability (25%).
Various respondents also had to file appeals to obtain disability recognition.
What are the barriers in disability assessment?
Most survey respondents experienced medically based assessments, yet assessors often lacked knowledge of the rare disease.
Furthermore, while almost all people with rare diseases undergoing a disability assessment had to provide medical reports, only 60% are asked about their daily activities, and even fewer about their care and support needs. Respondents also expressed dissatisfaction with how their needs were evaluated and how they were treated during the process.
People with rare diseases do not receive adequate support
More than half of people with rare diseases find it difficult to obtain publicly funded support, including assistive technology, mobility aids, and home and financial support.
Even those with disability recognition face challenges, as shared by a respondent from Spain: “I have been granted a disability certificate, but I still do not receive any help.”
Moreover, the majority of people with rare diseases who need personal assistance (62%) do not have access to it. And among those who have access, fewer than 1 in 4 are able to choose their personal assistant, a role which is undertaken mostly by family members.
They do not take part in society on an equal basis with others
More than half of people with rare diseases face discrimination due to their disease or disability including in healthcare, in public spaces, education and employment.
In addition, 79% of students have limited participation in school activities and the unemployment rate of people with rare diseases is nearly 4 times higher than the general EU unemployment rate.
What needs to change?
These findings highlight the urgent need for better disability recognition and independent living support.
To achieve this, national disability assessment processes must align with the UNCRPD, relying on a more holistic approach that considers functioning criteria and the person’s real-life situations.
Additionally, independent living support must be expanded, and access to it simplified.
While most of these barriers need to be addressed at national level, the European Union also has a role to play. The next phase of the European Strategy for Persons with Disabilities must support EU countries with improving disability assessments and independent living services. Employment and education gaps for persons with disabilities must also be tackled within the upcoming review of the European Pillar of Social Rights Action Plan.
Only then will the 30 million Europeans with rare diseases be enabled to fully participate in society on an equal basis with others.
About the survey
The survey focused on the “The impact of living with a rare disease: barriers and enablers of independent living and social participation”.
It was conducted online, in 25 languages, from July to September 2024. There were 9591 respondents based in 43 European countries.
This survey was conducted by EURORDIS-Rare Diseases Europe, through its Rare Barometer programme, a survey initiative that robustly collects the experiences and opinions of people living with a rare disease and their close family members on topics that directly concern them.