Living with a rare disease is more than just a medical problem; it is a whole complex of challenges that people face every day.

Living with a rare disease is not just a medical issue, it is a whole range of challenges that people face every day.

The recent Rare Barometer report, launched by EURORDIS in April 2025, reveals the reality of life for those living with such diseases in Europe and beyond.

What are the findings of this report?

1. According to the report, 8 out of 10 people with rare diseases live with a disability that often remains invisible to others. These conditions can be complex and progressive, with pain and fatigue becoming constant companions. However, the scale of this suffering is often not recognised by society, leading to misunderstanding and ignoring the needs of these people.
2. The problem is compounded by the fact that 15% of respondents have never undergone a disability assessment, despite the need for one. Many of those who did try to obtain official recognition of their condition faced repeated and cumbersome procedures that did not bring the desired result. This puts additional pressure on people who are already struggling to protect their rights.
3. Discrimination is another major issue: more than 50% of respondents reported having experienced bias in the workplace.
4. The unemployment rate among people with rare diseases reaches 23%, which is almost four times the EU average. The main reasons for this are the lack of adaptation of workplaces and health-related barriers.
5. Education is also becoming an area of ​​restrictions: 84% of students and schoolchildren experience difficulties in participating in the educational process. This leads to many of them remaining outside of public life and unable to realize their potential.

📌 This report only confirms the urgent need to overcome systemic barriers and create conditions for real access to support and inclusion for people with rare diseases!