An interview with ACTO Italia.
17 December 2025
1. Tell us about how ACTO Italia was started and the regions of Italy you serve.
ACTO Italia (Alleanza Contro il Tumore Ovarico – Alliance against Ovarian Cancer) was founded in 2010 by a group of patients and clinicians to break the silence on ovarian cancer and to give voice and support to women affected by one of the most complex gynecological malignancies. Its creation was driven by the necessity to form a united front, an “alliance” among patients, clinicians, and institutions to improve treatment and assistance. Starting in 2019, Acto Italia widened its activities to all gynaecological cancers.
From 2014 on, Acto Italia fostered the birth of 7 regional associations, due the peculiar structure of the Italian National Health Service, which is managed regionally: ACTO Campania, ACTO Lombardia, ACTO Piedmont, ACTO Puglia, ACTO Sicily, ACTO Tuscany, and ACTO Triveneto. This structure ensures widespread support to patients focusing on specific territorial needs.
2. What are your main priorities and programs supporting those affected by ovarian cancer?
The aim of ACTO Italia is to promote a real change in the management of ovarian cancer, working for its recognition as a health priority at the national and global level.
Therefore the Association’s mission is focused on:
- Promoting knowledge of ovarian cancer through information
- Encouraging primary prevention, screening, and timely diagnosis
- Facilitating access to quality care
- Offering assistance and services for the best quality of life for patients
- Promoting scientific research
- Supporting the rights of patients and their families
During these 15 years, Acto Italia and the regional associations organized many information campaigns and support programmes to improve the patients’ quality of life: nutrition, sexuality, oncoaesthetics, exercise, palliative care, fertility, psychological support, legal support etc.. They also contributed to improve awareness on ovarian cancer and on all gynaecological cancers participating actively in all World awareness days organized by WOCC, IGCS and ENGAGe.
One important groundbreaking campaign was that on BRCA mutation “Io scelgo di sapere” (2016) which involved patients and mutated healthy relatives together with clinicians with stories, videos and “question and answer” on the BRCA mutation.
Among the support programs of Acto Italia itself, let’s mention “Salute in Movimento” (Health in Motion), which is currently active. This is a free, personalized program that, with the help of a personal trainer and a dedicated app, offers patients physical activity paths to regain strength, energy, and confidence.
But one of the cornerstones of our work remains, always and foremost, information, which we provide through our website www.acto-italia.org (140,000 unique users in 2024 performing more than 1 million events) and our social media pages, where the whole Acto network has 30,000 followers altogether. This goes together with the guides on different topics, the webinars and the video interviews with clinicians and patients which can be watched on our dedicated platform Acto Digital and on our Youtube channel.
3. What are the most significant challenges facing your community when it comes to ovarian cancer?
The most significant challenges facing the community revolve around the insidious nature of the disease
and problems within the healthcare system:
- Late Diagnosis and Lack of Screening: ovarian cancer lacks an effective screening test, leading to
70% of diagnoses at advanced stages, as symptoms are often non-specific. - Therapeutic Inequalities: differences persist in access to excellent care, genetic and genomic testing, and innovative drugs depending on the region.
- Specialized centres in GO: it is crucial to ensure that patients are referred to highly specialized centers in gynecological oncology, where treatment outcomes are significantly better.
- Quality of life: due to the longer survivorship, new patient needs are emerging, fostering us to find new answers.
4. Can you share an initiative or achievement that you are particularly proud of and that highlights the impact ACTO is having?
ACTO Italia is particularly proud of “Cambiamo rotta. Donne con tumore ovarico. Verso nuovi percorsi” (Let’s Change Direction. Women with Ovarian Cancer. Towards New Paths), the first white paper ever on ovarian cancer, and of the related Manifesto for the rights of ovarian cancer patients, both downloadable from our website.
These documents, the result of in-depth research involving patients, clinicians, and experts, have had a
crucial impact because:
- They have given voice directly to the unmet needs of ovarian cancer patients in the different regions.
- They have provided concrete proposals to institutions to overcome the challenges of diagnosis and treatment.
- They have mobilized public and institutional attention, serving as a fundamental advocacy tool to promote political and health actions that tangibly improve the care pathway for patients.
These white paper had a national launch at the Ministry of Health in 2023 and has been translated in regional events (Campania, Triveneto and Puglia) in 2024 and 2025, to focus the attention of the regional Health Authorities on specific territorial needs. It was awarded the “Cracking Cancer” Award, that is assigned by Italian oncologists.
You can learn more about ACTO Italia on their website: https://www.acto-italia.org/it
