The Italian Cystic Fibrosis Research Foundation (FFC Ricerca) relies on approximately 5,000 dedicated volunteers scattered across all Italian regions who raise funds and awareness about the disease. For reasons of identity and statute, FFC Ricerca has always paid attention to the ways in which science and research are disseminated and shared with the volunteers who support it.

FFC Ricerca dissemination initiatives: publications, website columns, webinars, the annual seminar, the Transparent Research initiative, the Consultation Group.

Experts Together aimed at promoting the creation of a study group composed of 22 volunteers, people with CF, and their family members. This group embarked on a journey of mutual understanding, cultural exchange, education, and the development of a common language. Specific tools were identified for the transfer and sharing of fundamental knowledge on basic and clinical research methodology regarding scientific aspects of cystic fibrosis.

The ultimate goal of the Experts Together group was to collaborate with the Scientific Directorate of FFC Ricerca on research topics, its priorities, the role of patient-parents as active research subjects, clinical research outcome measures, and the dissemination of scientific results.

A first step for the creation of this group of expert volunteers is represented by a series of 8 online meetings.

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