EUPATI for ME – Patients share their EUPATI training experience.

I learned about the opportunity to take part in the European EUPATI training through the Parent Project association, of which I have been a member since our son’s diagnosis.

The course represented a major opportunity to learn about and explore all aspects related to medical and scientific research, from discovery through to the regulatory pathway of a potential therapy.

Thanks to the knowledge I gained, I was first able to support my association by contributing to the evaluation of scientific projects submitted to us. Beyond this, I had the opportunity to contribute as a caregiver in several working groups and projects related to clinical trials.

I have been actively involved as a trainer for other patient representatives, as well as for audiences less directly engaged in the field, such as journalists and the general public.

I was also involved by pharmaceutical companies in the review of clinical trial protocols and participated in Investigator Meetings across different disease areas. In these settings, we analysed study protocols together to identify potential critical issues for recruited patients and possible measures to prevent early withdrawals from trials.

I have taken part in multi-stakeholder working groups focused on research and clinical experimentation. At a more local level, I was invited to attend sessions of the Ethics Committee of the provinces of Treviso and Belluno as an observer during discussions on rare and orphan diseases.

This is not an exhaustive list, as opportunities to be involved as an Expert Patient have been numerous and varied. However, I am convinced that I would not have had these opportunities without the strong preparation provided by the EUPATI course.

Personally, I would encourage everyone to get in touch with the EUPATI Expert Patient Academy, as it offers training and engagement opportunities at different levels, starting from basic knowledge suitable for any citizen. I would particularly recommend the Expert Patient training course to anyone wishing to become an effective and recognised stakeholder in medical and scientific research.

Stefano Mazzariol

What about Stefano

Stefano Mazzariol is an EUPATI Patient Expert who has long been active in clinical research and health advocacy. The father of a young man with Duchenne muscular dystrophy, he has transformed his personal experience into structured engagement, becoming one of the first European caregivers in the EUPATI (European Patients’ Academy on Therapeutic Innovation) programme. He has been actively involved for many years in the Parent Project APS association, where he also served as Vice President, and is a strong advocate for the informed involvement of patients in drug development processes and healthcare decision-making.