EU partnership on rare diseases aims to enhance medical research
- 36 million Europeans wait an average of 4.7 years for a rare disease diagnosis.
- Collaboration among EU member states and the European Commission remains crucial despite budget cuts.
- A European partnership on rare diseases has been announced to improve diagnostics and research.
In recent months, various stakeholders, including patient groups, companies, and Members of the European Parliament (MEPs), have raised concerns about the state of rare disease diagnostics in Europe. Currently, approximately 36 million Europeans experience a lengthy wait of around 4.7 years on average before receiving a diagnosis for their rare conditions. The collaborative efforts of member states with the European Commission are expected to continue despite the anticipated budget cuts to EU health programs in the upcoming mandate. Furthermore, while several member states have established national plans to address rare diseases, a unified action plan at the EU level has yet to be developed. To address these challenges, Giedre Peseckyte will lead a POLITICO Live working group to explore the alignment of national and European strategies on rare diseases, focusing on medical research and innovation. Questions surrounding the necessity of a comprehensive EU action plan, potential objectives, and measures necessary for its implementation are central to these discussions. Critical considerations include improving tech development for faster diagnostics, bridging fragmented national strategies, and fostering industrial sovereignty in rare diseases therapeutical innovation. This initiative follows the announcement by Stella Kyriakides regarding a European partnership on rare diseases aimed at boosting research and innovation in the field, although expectations remain regarding its successful national execution.