Rare Disease Hub

EUCOPE works to strengthen the whole EU environment for the development of rare disease treatments.

With almost half of our members involved in the research and development of therapies for rare diseases, EUCOPE offers an opportunity for members to discuss the latest rare disease and orphan medicinal products‘ national and European legislative and policy developments without neglecting relevant global or international developments (North America & Asia). Wider membership can provide feedback and contribute to EUCOPE’s engagement on the OMP Regulation and validate the Incentives Steering Group’s approach.

Read below all the latest news regarding our activities on rare diseases, orphan medicinal products and the rare diseases community. For more information on our work on rare diseases, please contact Victor Maertens.

2025 RareInsights Campaign: keeping Rare Diseases a priority

As the European Commission sets its vision for 2025 and beyond, ensuring rare diseases remain a political priority is crucial. A strong policy framework is needed to foster innovation and improve access to treatments.

In the coming weeks, EUCOPE and its members will share insights on how the EU can support rare disease innovation through:

• A competitive R&D ecosystem
• A dedicated Rare Disease Action Plan
• Key policy initiatives, including:
  • Life Science Strategy
  • Biotech Act
  • Competitiveness Compass
  • Cross-border healthcare
  • Review of the Clinical Trial Regulation

Stay tuned for expert insights through articles, podcasts, video statements.

EUCOPE Member spotlight

Blog articles

Podcasts

Video statements

Alexander Natz – EUCOPE Secretary General

Johanna Grames – AOP Health

Andrea Bonetti – Chiesi

Toon Digneffe – Takeda

Erwan Gicquel – Miltenyi Biotec

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