Stefano Mazzariol, Italy

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“I would like to work with stakeholders to bring patients closer to research. I wish that all patients could benefit from the knowledge that I am acquiring in this course.”

I am a father of a child affected by Duchenne Muscular Distrophy (DMD), a rare disease still without an effective treatment, and this was certainly the first incentive to join the EUPATI course. For second, I studied chemistry at university, and I always had great interest for scientific topics in general. The opportunity to learn more about the process of research and development of new medicines motivated me a lot. Since I have joined the community of patients DMD and their families (through Italian patient’s association Parent Project), I have made myself available to help anyone who need to understand the complex issues of research in progress and ongoing clinical trials.

The EUPATI course is providing me important knowledge to better understand the whole process of research on future therapies, the mechanisms, the rules, the reasons for these, and how patients can contribute to research (and by this help themselves). That is what I expected from the course, and my expectations were fully satisfied. Day by day, I’m making the learnings of the course available to patient communities (but also to the people in general, because we could all become patients in the future), either via social networks and the media, or by participating in conferences in Italy organized by patient associations operating in various diseases. I’m spreading the message that more patients should know about the development of new therapies, because they are the first ones to evaluate safety and efficacy of a new medicine. By this, they can help to make clinical trials more effective. Well-informed patients can also better understand the real status of research in their disease area, follow-up on its development, and make informed choices in actively participating in clinical trials. At the same time, I want to become a good representative of patient communities and make their voice heard to governments, pharmaceutical companies, stakeholders, doctors, healthcare systems, media and other institutions. Certainly, the knowledge acquired in the course will make my work more effective and influential.

Participating in the Expert Patients Training Course has given me important knowledge in regulatory process of the new therapies, and in relationship between the various stakeholders. For this reason I recently got the assignment of the science section in the Governing Board of Parent Project Onlus (the patient organization I belong to), and since a few months I am involved in a project called “Alleanza Neuromuscolare” (Neuromuscular Alliance) that wants to create a partnership between various patient’s groups, scientific societies and charities to join forces in themes common to neuromuscular diseases, from clinical practice to research development. It was also required my testimonials on patient involvement both in meetings of Italian patient associations, and in a guide titled “The role of patient organizations in theItalian and European institutions”, published by an association on diabetes. I hope theseareonlythe first steps to do a good work, for the benefit of patients and their families.

Stefano Mazzariol, Parent Project Onlus (Italy), EUPATI Trainee

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