Shaping a brighter future for Rare Cancer & Rare disease patients!

Co-hosted by MEPs Stine Bosse and Maria Guzenina, this gathering marked a key step toward improving the lives of the 30 million Europeans living with Rare Diseases, including those with rare cancers.

Key Highlights from the Event:
· Unified European Action: The urgent need for a European Action Plan for Rare Diseases to align national strategies and boost research was a central focus.
· EURACAN’s Vital Role: European Reference Networks like EURACAN are essential for fostering collaboration, structuring care, and driving innovation for Rare Diseases patients across Europe.
· Patient-Centered Approach: Patient associations must be equal partners in shaping policies, ensuring their voices drive meaningful change.
· Leveraging Health Data: The Nordics robust registries and biobanks set a global standard for clinical trials and research, paving the way for equitable access to innovative treatments.

Inspiring Words:
· MEP Maria Guzenina: “When a room of people gather together with the intention to make an impact, things can happen.”
· MEP Stine Bosse: “Working together is the most important thing today,” emphasizing the need to honor patient advocates and include them in legislative processes.

A huge thank you to the organizers, panelists, and participants for their unwavering commitment to rare diseases. Let’s keep the momentum going toward the Nordic Rare Disease Summit 2025 in Copenhagen! Read more here.