As a RSE Board member and ePAG patient representative for the ITHACA ERN, I was privileged to be invited to attend this new initiative, which was held at the IMAGINE Institute, Paris March 19 – 23. It was financed through the EU funded Solve-RD project, of which EURORDIS is a partner.
The aim of the week’s training was to deepen the patient representative’s understanding of how pre-clinical research translates in to real benefits for rare disease patients and it aimed to equip the participants with the knowledge and skills, so they are empowered to effectively participate in discussions with researchers, policy makers and companies responsible for research or research infrastructure.
I shared the week of talks given by expert speakers, covering topics including the history of genetics, diagnostics, new technologies in gene therapy and drug repurposing with representatives from 30 other patient organisations from all over Europe. We were able to visit operational laboratories and spend time making new links with others working for rare disease organisations throughout Europe.
Yvonne Milne MBE