Our priorities

How Cittadinanzattiva – Active Citizenship Network advocates for patients with rare diseases

at national & EU levels

In Italy:

National Coalition of Associations for Patients suffering from Chronic & Rare Diseases (CnAMC). Established in 1996 by Cittadinanzattiva, this network represents an example of cross-cutting alliance between associations of people with chronic & rare diseases, for the protection of their rights. It has around one hundred members, 29 of them which focus on rare diseases.
From 2000, National Annual Report (XX Edition, Dec. 2022)
Thematic dossier (e.g. on 2008)
Website (www.malattierare.cittadinanzattiva.it)
In Italy Cittadinanzattiva is the only civic association officially involved in the national ethics committee for clinical trials with advanced therapies, set up in 2022. The committee reflects on the role that such committees can play in ensuring that innovation and access go hand in hand in the field of ATMPs.
At the national level, advocacy initiatives such as Civic Reccomendation and Appeal on extended neonatal screening , which is still blocked, to recognize the role of caregivers, policy dialogue, surveys, etc.
At the regional level, promoting alliances (e.g. Emilia, Veneto, Sicily, etc.) and new front-line services (e.g. Campania)

At the EU level:

Celebrations for European Patients' Rights Day focusing on issues related to rare diseases

Policy dialogue initiatives at the EU Parliament

EU training & roundtable sessions:

Public consultation:

Roadmap "Cross-border healthcare – evaluation of patients’ rights". Read Cittadinanzattiva-Active Citizenship Network’s feedback about the Roadmap "Cross-border healthcare – evaluation of patients’ rights" (February 2021)

Documents & communication campaigns:

EU projects & international initiatives:

Since 2023 | COLLABORATE. 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.

Intenational peer-reviewed publications: