EURORDIS study reveals key findings on disability recognition and social participation for people with rare diseases
EURORDIS has released findings from their Rare Barometer programme, revealing new insights on the barriers to disability recognition and social participation experienced by the rare disease community. These results draw on survey responses collected from nearly 10,000 individuals in Europe across 43 countries, representing 1,643 different rare diseases.
There are approximately 30 million people living with a rare disease (PLWRD) in Europe, who face numerous, ongoing barriers in accessing their social and independent living rights. These challenges place a significant emotional toll on individuals already struggling with complex health conditions, as described by one survey respondent from Germany:
“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.”
This study aimed to identify lived experiences of such barriers, as well as limitations to social participation, in order to identify strategies to enable the full participation of PLWRD in all areas of society.
In the report, results from the survey are organised into four domains: disability, disability recognition, independent living, and social participation. Key findings from the study include:
- 8/10 people with rare diseases live with disabilities, the majority of which are diverse and complex;
- Respondents’ disabilities are not adequately recognised: only 57% had undergone a disability assessment, and among them, 1/3 did not obtain the outcome they expected;
- 53% found it difficult or very difficult to obtain publicly funded support such as home or financial support, assistive technology or mobility aids;
- 58% experienced discrimination related to their rare disease or disability in settings such as healthcare, employment, education or housing;
- 23% were unemployed, compared to the 2023 unemployment rate in the general population of the EU of 6.1%.
Overall, these findings demonstrate the ongoing unmet needs of and barriers facing the European rare disease community. In order to continue working towards a better reality for PLWRD, policy change is needed. While much of the responsibility for this change falls under the jurisdiction of national welfare systems, it is also important that the next phase of the European Strategy for Persons with Disabilities include concrete actions to improve disability assessment and recognition systems, as well as independent living support. Furthermore, these results should be taken into account during the upcoming review of the European Pillar of Social Rights Action Plan in order to address the remaining employment and education gaps.
