The next intake of the EUPATI Patient Expert Training is now open for registrations!

The EUPATI Patient Expert Training Programme is a training programme about the medicines’ development process. It covers the entire lifecycle of medicines research and development (R&D), from the design and execution of clinical trials to regulatory processes and Health Technology Assessment (HTA).

In addition to detailed information on each step of the process, the training also describes how patients can be involved at each stage. The overall objective of the programme is to obtain a thorough understanding of the medicines R&D process, the patients’ role within and build capacity among the patient community to take on an active role in collaboration with the other involved stakeholders.

Graduates of the EUPATI Patient Expert Programme (EUPATI Fellow Programme) are also known as EUPATI Fellows. The EUPATI Fellow title certifies the knowledge gained and gives graduates the opportunity to be recognised as expert patients.

While the programme is mainly addressed to patients and patient representatives (e.g., carers and persons working for patient organisations), it is open to all individuals interested in medicines R&D and patient engagement. The programme does not focus on any specific disease area, examples and case studies are provided from a variety of different disease areas. The only requirement for enrolment is a good proficiency of English, as the training is provided in English.


We have successfully launched a new program called Educational Radio Program for NMD Community 2021. Find more on host countries, show dates, and much more:

We are pleased to announce the partnership between EAMDA and ECMTF (European Charcot Marie Tooth Federation), established through a signed Memorandum of Cooperation, for the benefit of the NMD community across Europe.

The European CMT Federation is a voluntary non-profit federation registered in Belgium, formed by national organizations supporting people living with Charcot Marie Tooth disease, a neuromuscular condition that affects 1 in 2500 people worldwide. ECMTF was founded in 2016 and has rapidly grown since then, extending its collaboration beyond the European border, towards USA, China or Israel.

Not only that EAMDA and ECMTF share common interests and goals, but we do consider that this cooperation will generate a lot of benefits for the people we represent, through the sharing of expertise and through common projects that will lead to a significant increase in the quality of life of people with neuromuscular disorders, CMT included.

This EAMDA-ECMTF partnership will also help us become a stronger and more influential voice for the NMD community, that will not only increase public awareness of these diseases, but also help us create a wider stakeholder involvement network.

“Together we are stronger” as our partners from The European Charcot Marie Tooth Federation (ECMTF) say!

The ProDGNE consortium is pleased to invite you to the ProDGNE Kick-Off Webinar. In this webinar we will present ProDGNE, a 3 year transnational pre-clinical research project which brings together patients and researchers from Europe and Canada to develop an innovative therapeutic compound to treat GNE Myopathy (GNEM), a rare genetic muscle disease affecting young adults. Speakers: – Fabrizio Pertusati, School of Pharmacy and Pharmaceutical Sciences, Cardiff University, UK – Hanns Lochmüller, University of Ottawa Faculty of Medicine and The Ottawa Hospital Department of Medicine, Canada – Michela Onali, Gli Equilibristi HIBM, Italy – Paula Videira, Faculdade de Ciências e Tecnologia at Universidade NOVA de Lisboa, Portugal – Pierluigi Caboni, Department of Life and Environmental Sciences, University of Cagliari, Italy – Rüdiger Horstkörte, Medical Faculty, Martin-Luther University Halle-Wittenberg, Germany ProDGNE is funded in the framework of the European Joint Programme on Rare

Please follow this link to register.