1 in 30 people in the Italian population are healthy carriers of cystic fibrosis. This statistic inspired the title of a three-year research, training and awareness project launched in 2022 (phase 1) by the Italian Cystic Fibrosis Research Foundation on CF carrier testing, namely 1 in 30 and You Don’t Know It.

Cystic fibrosis is a severe, multi-organ degenerative genetic disease that currently has no definitive cure, and that significantly impacts both individual health and the economic and social aspects in general. The Italian National Health Service (NHS) currently offers CF carrier screening to the individuals considered at high risk of having a child with CF, i.e. those with family members affected by CF or a family history of the disease.

In 2022, the Mario Negri Institute for Pharmacological Research (IRFMN) IRCCS and LIUC|Cattaneo University were commissioned by the FFC Ricerca to perform a Health Technology Assessment. The study examined the potential benefits of introducing an organized cystic fibrosis carrier screening program for individuals and couples of reproductive age, regardless of their family history. The findings revealed limited knowledge and awareness of the disease among the general population, a general tendency to support expanded screening (also within the CF community), and a potential return on investment within six years of introducing the broader screening program, following certain economic and organizational adjustments to the healthcare facility in order to accommodate an increased volume of services.

In 2023, phase 2 started with the launch of the website testfibrosicistica.it and the awareness campaign 1 in 30 and You Don’t Know It, in collaboration with the medical-scientific communication agency Zadig. The website serves as a trusted source of information on CF carrier testing and enables couples to make informed decisions based on clear and thorough information, ensuring that their choices align with their personal values. It also acts as a valuable tool for healthcare professionals, facilitating discussions about various options during clinical consultations. The campaign was supported by a social media editorial plan (Facebook, Instagram, LinkedIn and YouTube), featuring weekly sponsored content aimed at the target audience. It received a positive feedback, resulting in increased engagements, shares, and website traffic. User comments reflected a generally favourable sentiment towards these initial steps.

The Foundation’s commitment for 2024 focuses on training professionals in general medicine, pediatrics, gynecology, obstetrics, and genetics. It further included contributions to a webinar series titled Genetic diseases and carrier tests (17 April, 17 June, 17 October) by Dr. Francesca Favarelli, Director of the Genomics and Clinical Genetics Unit at the IRCSS Giannina Gaslini Children’s Hospital, and Dr. Carlo Castellani from the Cystic Fibrosis Center at the Giannina Gaslini Institute. In addition, two dedicated sessions were held both for the FC community in November, and for the project supporters in December. Furthermore, the Foundation is actively engaged in advocacy efforts with institutional decision-makers. More specifically, this includes a series of calls with Members of Parliament to push for the transformation of the Senate-approved agenda (December 2023) into a budget law, as well as discussions with regional councilors to involve select pilot regions (Lombardy, Lazio, Veneto, and Tuscany). The results of these efforts were presented in Rome, on 23 September 2024, during a meeting on the progress made (at the Hotel Bettoja Mediterraneo), followed by a press conference on 24 September in the Ice Room of the Hotel Nazionale in Rome, where a dedicated awareness video, created for social media campaigns, was presented.

The project is a continuation of Phase 1 and Phase 2.

The adoption of phase 3 of the FFC Ricerca 2024 strategic project. “1 in 30 and You Don’t Know It. An information and awareness campaign on cystic fibrosis healthy carrier testing” is mainly reserved for companies, banks and foundations.