Source: European Parliament
Priority question for written answer P-000845/2025
to the Commission
Rule 144
Tomislav Sokol (PPE), Elena Nevado del Campo (PPE), Liesbet Sommen (PPE), Peter Liese (PPE), Adam Jarubas (PPE), András Tivadar Kulja (PPE), Dan-Ştefan Motreanu (PPE), Michalis Hadjipantela (PPE)
More than 6 000 distinct rare diseases have been identified, each affecting a relatively small number of individuals but collectively impacting millions. In the EU alone, it is estimated that between 27 to 36 million people are living with a rare disease. Alarmingly, 75 % of rare diseases appear in childhood, often leading to severe disability, chronic health complications or even life-threatening conditions. Many of these diseases remain under-researched, with limited treatment options.
- 1.Given these figures, does the Commission plan to prioritise rare diseases by adopting a comprehensive EU strategy for rare diseases that will provide concrete objectives, funding, clear benchmarks and a defined timeline to ensure progress in research, prevention, diagnosis, treatment and patient support?
- 2.Does the Commission intend to simplify the rules on cross-border healthcare to facilitate faster and more equitable access to treatment for rare disease patients, given that many rare disease patients face significant challenges in accessing specialised treatment across borders on account of complex administrative procedures?
- 3.Given the high cost of rare disease treatments and the financial burden on national health systems, does the Commission plan to establish a framework for supporting Member States in facilitating access to cross-border healthcare for rare disease patients?
Submitted: 26.2.2025