Also this year Cittadinanzattiva-Active Citizenship Network joined the annual COLLABORATE Summit, once again demonstrating the power of what a united rare disease community can achieve. Along two days in Madrid, leaders of patients’ advocacy groups across the globe reflected on the progress made in 2025, reviewed achievements across all workstreams, and aligned on new priorities for 2026, receiving a strong endorsement by the Member of the European Parliament Andriukaitis.

The Summit focused on two critical global challenges: accelerating diagnosis of adult-onset rare diseases; improving transition from paediatric to adult care. In particular, the Director of Active Citizenship Network presented a concrete initiative to be leveraged at the EU level titled “Elevating the rights of patients with adult-onset rare diseases”.

COLLABORATE is a global community of people living with rare diseases, patient advocates, clinicians, researchers, and partners united around one mission: improving the lives of those affected by rare diseases through collective knowledge, shared experience, and meaningful action. With a particular attention to the condition of patients with adult-onset rare diseases. To know more, click here, watch the videos (A – B) and visit the COLLABORATE  FB page.  Click to know more about the previous ACN participations in Prague (2024) and Lisbon (2023).