Thanks to “COLLABORATE” - global initiative led by Pfizer - also this year Cittadinanzattiva-Active Citizenship Network will continue to be engaged on adult rare diseases at the international level with the aim to strengthen evidence base and support communities to activate change. About it, two policy documents, co-developed with the COLLABORATE working groups in 2024 and also endorsed by ACN, have been published.

Both documents - “Ensuring the equal consideration of and attention to older adults with rare diseases in policies worldwide” and “Ensuring integrated, coordinated care for all people living with a rare disease across their entire life course” provide a foundation for elevating the challenges faced by people living with adult rare diseases to a policy audience, and should be leveraged for the development of local initiatives that aim to drive policy change. In particular, ACN is interested to leverage them to the EU Parliament with the support of the MEPs Interest Group “European Patients' Rights and Cross-border Healthcare” along its third mandate. Read more about ACN engagement on the topic on 2023 and 2024.