THE INTERNATIONAL BRAIN TUMOR ALLIANCE WORLD SUMMIT

I’ve been wanting to write this article for a long time. I’m doing it today, exactly seven years since my puppy Emanuele passed away for a glioblastoma. Seven years that seem like a moment in time and, at the same time, a lifetime. Writing today is no coincidence: it’s a way to hold together memory and commitment, pain and responsibility, past and future.

In early November, Rome hosted the Sixth Biennial World Summit of Brain Tumor Patient Advocates, organized by the International Brain Tumor Alliance (IBTA). This event, more than any other, represents the profound meaning of the work that so many volunteer associations carry out every day around the world: transforming the experience of illness into shared knowledge, concrete support, and collective action.
The IBTA World Summit is held every two years and brings together, by invitation, over 100 representatives of brain tumor patient organizations from every continent. It is not a traditional medical conference and is not aimed directly at patients, but at those who work with them daily: associations, caregivers, advocacy groups, quality-of-life experts, researchers, and healthcare professionals.
The rationale is simple and powerful: brain tumors affect who we are—identity, cognition, personality—and no organization can address such a complex challenge alone. Networking, the exchange of best practices, international discussion, and a shared vision are needed.

During the Rome Summit, the topics discussed included therapeutic advances (surgery, radiotherapy, immunotherapy), equitable access to care and disparities between countries, quality of life and patient-reported outcomes, neuropsychological support, ethics, data, registries, and active patient involvement in research, artificial intelligence applied to neuro-oncology. But above all, the focus was on people.

Rome was more than just a logistical hub. It was a symbolic place: a city that for centuries has represented the meeting of cultures, histories, and communities. In the corridors of the Summit, between plenary sessions and interactive workshops, experiences from Europe, America, Africa, Asia, and Oceania converged, united by the same urgent need: improving the lives of those facing brain tumors.

It is in this context that Glioblastoma.IT ODV also made its contribution. During the Summit, Glioblastoma.IT ODV presented the “Speranza e Coraggio” project, an initiative created to address an often overlooked yet crucial need: ongoing, specialized psychological support for patients with glioblastoma and high-grade brain tumors and their families. As you know, the “Hope and Courage” project offers free, specialized psychological support throughout the country, individual online sessions with psychologists trained in brain tumors, a technological infrastructure that simplifies access to the service, and a scientific assessment of the impact on quality of life.

The project is divided into specific phases—training, service delivery, assessment—and is integrated with digital tools such as the Glioblastoma Navigator, in a “supermind” vision where patients, caregivers, specialists, and technology collaborate to address the complexity of the disease. Presenting “Speranza e Coraggio” in an international context like the IBTA had a dual value: on the one hand, sharing a replicable model, and on the other, gathering inspiration, feedback, and connections with similar organizations in other countries.

A Summit like this doesn’t end with the last slide. It ends, or rather, truly begins when you return home. You return with greater awareness, more ideas, but also with a greater responsibility: that of transforming international discussion into concrete actions on the ground.

For me, personally, all this has an even deeper meaning. Every project, every meeting, every word spoken on these topics carries Emanuele’s face. Not as a memory that immobilizes, but as a constant drive to do better, to never settle, to seek solutions where today there are only questions. Seven years later, I know we can’t change what happened. But we can, and must, work to ensure that those facing glioblastoma today don’t feel alone. The IBTA World Summit in Rome reminded us that, together, this path is possible.