The Voice of Rare Disease
Patients in Europe
Rare diseases: New steps in EU collaboration to improve citizens’ lives
European Reference Networks: cross-border is better
Maltese Presidency of the EU Council: rare diseases high on the agenda
- Structured cooperation in healthcare for rare diseases to ensure the success of ERNs and their full integration into national healthcare systems, working towards patient-centred healthcare pathways.
- Structured cooperation in research for rare diseases to ensure longer-lasting and integrated support for rare disease research, which is connected between the EU and most Member States, and realised through the ERNs.
- Structured cooperation for improved access for patients to therapies and innovative technologies to consolidate current initiatives aimed at improving access. This call for cooperation to improve access to therapies follows the recent publication of a EURORDIS reflection paper “Breaking the Access Deadlock to Leave No One Behind”.