In Italy, 1 in every 30 people is 1 healthy carrier of cystic fibrosis (CF), amounting to nearly 2 million individuals. When both partners in a couple are healthy carriers (a probability of 1 in 900) each pregnancy carries a 1 in 4 chance (25%) of resulting in a child affected by the disease. Carrier status can be determined through a test that analyses DNA from a simple blood sample, conducted in specialized laboratories.
The 1 in 30 and you don’t know it project was launched in 2021 in response to a request of the CF community to raise awareness and provide future parents with information they need to make informed and conscious choices.
To date, Italy has lacked a comprehensive screening policy for cystic fibrosis carriers that includes genetic testing, public education, training for healthcare professionals, easy access to testing and post-result genetic counseling. Findings from the Health Technology Assessment (HTA) – commissioned during phase 1 of the project by FFC Ricerca to the Mario Negri Institute for Pharmacological Research (IRFMN) IRCCS and LIUC|Cattaneo University – indicate a generally positive attitude towards the introduction of widespread screening. Although the programme would require an initial investment, extending carrier testing could become economically sustainable by the sixth year of implementation.
As concerns the information dissemination, phase 4 of the project will continue with awareness raising activities on cystic fibrosis and carrier testing involving the general population (bottom-up activities). The contents of the www.testfibrosicistica.it site will be implemented, new social networks campaigns will be launched, featuring personal testimonials and informative materials aimed at highlighting the importance of carrier testing. Healthcare and institutional stakeholders will be engaged through webinars, conferences and corporate events, accompanied by the distribution of targeted informational materials.
To ensure widespread knowledge of Cystic fibrosis and carrier testing among healthcare professionals, a free Distance Training (FAD) programme will be offered to gynaecologists, general practitioners (GPs) and midwives. The aim is to provide up-to-date information on cystic fibrosis and healthy carrier testing to improve communication and counselling for young couples.
At the institutional level (top-down activities), phase 4 will also focus on further promoting the importance of carrier testing by organizing closed-door regional meetings to foster dialogue with institutional and healthcare stakeholders, thus encouraging the adoption of effective strategies and launching of a pilot project in various regions, as recommended by the Health technology Assessment (HTA).
The project builds on the work carried out in phases 1, 2 and 3.
The adoption of phase 4 of the FFC Ricerca 2025 strategic project: 1 in 30 and you don’t know it is primarily intended for companies, banks and foundations.
RESULTS
1.Specialist distance learning in healthcare (FAD). In collaboration with the scientific information agency Zadig, a series of webinars entitled “Genetic diseases and carrier testing” was held in 2024 for healthcare professionals, with the contribution of leading specialists. A FAD for Continuing Medical Education (CME) entitled “Genetic diseases: counselling and communication in clinical practice” was launched online in October 2025 to provide healthcare professionals (doctors and midwives) with up-to-date tools to support couples in their reproductive choices.
A total of 500 healthcare professionals enrolled in the FAD, including 146 midwives, 20 paediatricians, 19 gynaecologists and 19 general practitioners.
2. Institutional advocacy for regulatory consolidation. In collaboration with RareLab, a strategic consulting firm specialising in Patient Advocacy, Market Access and Public Affairs, intensive advocacy work was carried out through calls and discussions with parliamentarians and institutional representatives to draft a bill. Two closed-door board meetings were convened.
On October 9th 2025 a bill was presented containing: “Provisions concerning the introduction of an experimental plan for the free provision of genetic testing for the early identification of cystic fibrosis risk in women of childbearing age”.
3. Public communication and awareness-raising through events and media campaigns. The “Cystic Fibrosis Carrier Test Awareness Week” was established, a national initiative that invited Italian municipalities to illuminate monuments, buildings or representative spaces in their territories in green, FFC Ricerca’s symbolic colour, or to display the official campaign banner on institutional channels. The 2024 and 2025 editions of Awareness Week involved over 200 municipalities, helping to inform the population about the existence and value of CF carrier testing. The 2025 edition was sponsored by the National Association of Italian Municipalities (ANCI).
Content was created for Facebook, Instagram, LinkedIn and YouTube for the target audience, which received excellent feedback.
On 3 February 2026, a bill was presented to the Senate entitled: “Measures for the establishment of a screening plan for healthy carriers for the early identification of cystic fibrosis risk”; the text of the bill has not yet been published.
In phase 5.
who adopted the project
roberto 50
€ 8.000
armitoteatro
€ 10.000
delegazione ffc ricerca di cecina e rosignano
€ 30.000
delegazione ffc ricerca di crotone “vita in te ci credo”
€ 30.000