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.


EAMDA has 2 new advocacy experts in medicines research, development and therapeutic innovation!

Jana Popova, EC Member of EAMDA and member of the Bulgarian Association for Neuromuscular Diseases and Arabela Acalinei, secretary of EAMDA and President of Neuro Move CMT Association in Romania are both graduates of the European Patients’ Academy on Therapeutic Innovation (EUPATI).

EUPATI is a 15 months intensive training course that has been specifically designed to meet the needs of patients and patient advocates who have the motivation and skill set to acquire and apply expert-level knowledge across the whole spectrum of the medicine research and development process. It coveres topics like medicine research and development, clinical trials, regulatory affairs, pharmacovigilance, HTA and therapeutic innovation.

As an organization that strongly believes in a good representation of our members, we are glad that EAMDA’s team members are capable of engaging European stakeholders, aligned to EU policies, good practices and inovations.