08 December 2025
European Parliament Publishes Results from the 2025 Public Consultation on Rare Diseases
Summary
- The European Parliament has released its report on the 2025 public consultation on rare diseases
- Over 4,000 contributions came from patients, families, clinicians, organisations and public bodies
- Main concerns include delayed diagnosis, unequal access to care and limited treatment options
- Respondents highlighted the importance of the European Reference Networks but called for greater visibility
- Findings will support future EU rare disease policy and coordinated action
The European Parliament has published its in-depth analysis of the 2025 public consultation on rare diseases, gathering views from thousands of people across Europe. The consultation brought together contributions from people living with a rare disease, families, patient organisations, healthcare professionals, public authorities and international bodies. Together, they offered a broad and honest picture of the daily challenges faced by rare disease communities.
Rare diseases affect 6 to 8 percent of the EU population, which means that between 27 and 36 million people will experience a rare disease at some point in their lives. The findings of this consultation underline the value of coordinated European cooperation and clear policy action.
Key challenges shared by respondents
Several themes appeared consistently across the consultation:
- Many people still face long delays before receiving an accurate diagnosis
- Fewer than five percent of rare diseases have an approved treatment
- Access to expert care often depends on where a person lives
- Daily life is affected by social barriers, limited support and a lack of understanding
- Awareness of EU-level initiatives remains low despite their importance
These concerns reflect long-standing barriers experienced by patients, families and professionals across Europe.
Priorities for stronger European action
Participants were also clear about what they hope to see in future EU policy:
- Faster and fairer diagnostic pathways
- Stable and increased research funding
- More equitable access to treatments and specialist care
- Continued support for the European Reference Networks
- Better coordination between national healthcare systems
- Improved data sharing and stronger collaboration across borders
- Meaningful involvement of patients and families in policy development
These priorities align with the needs expressed by many organisations advocating for better rare disease care.
What the report mean for rare disease care in Europe
The consultation highlights the importance of European cooperation in improving diagnosis, care and support. Respondents described the European Reference Networks (ERNs) as an essential source of expertise, but many felt that the Networks need greater visibility and clearer referral pathways. There were calls for better integration of ERN knowledge into national systems and more consistent access to expert centres.
The findings also show strong support for more training opportunities, improved guidance for healthcare professionals and closer collaboration between countries. The European Parliament’s analysis will help shape future discussions on rare disease policy and guide work within the Committee on Public Health.
You can read the full report on the European Parliament website.