Call to Action for the rare cancer & rare disease community

📢 Call to Action for the rare cancer & rare disease community

We invite all ERN members to endorse and sign the Declaration on a European Innovation and Care Ecosystem for Rare and Complex Diseases, launched during the High Level Meeting for Rare and Complex Diseases (HLM Rare) in December 2025.

This joint political and strategic commitment — developed with patients, healthcare professionals, ERNs, academia and industry — sets out 8 Priority Actions to accelerate progress, improve access to diagnosis and treatment, strengthen clinical research and infrastructure, and secure sustainable funding for ERNs in the 2028–2034 EU framework.
By signing, you help:
• Drive a comprehensive EU Action Plan on Rare Diseases
• Strengthen recognition and long-term sustainability of ERNs
• Amplify our collective voice in EU policy and funding priorities
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Over 50 organisations have already joined — now it’s our turn to make an impact.
Sign the Declaration via the link here and indicate your ERN affiliation (or “not applicable”).

Thank you for your continued commitment to advancing care for people living with rare and complex diseases.