EURORDIS Winter School – International collaboration in the field of scientific innovations and translational research (EPF Youth Group)

Event Report by Jana Popova

From 11th to 15th March I had the great honour to participate in the second edition of the EURORDIS Winter School, representing EPF Youth Group and European Alliance of Neuromuscular Disorders Associations (EAMDA). This year the Winter School was organised in the “city of lights”, Paris, and gathered 30 patient advocates, medical experts and researchers. The training was focused on scientific innovations and translational research and was held in the prestigious Imagine Institute.

The Winter School consists of one week face to face training and preliminary online training modules, available for free in the Open Academy website. The main purpose of this event was to increase patient representatives’ knowledge in the field of genetic and preclinical research, and to sharpen their advocacy skills. 

Powerful kick-off and highlights of the programme

The first day of the Winter School began with an inspiring presentation from Prof Jean-Louis Mandel from the Institute of Genetics and Molecular and Cellular Biology in Strasbourg. He talked about the history of genetics and its development over the years. His presentation kicked off a great week full of inspirational lecturers, interactive sessions between participants and practical visits to the laboratory of Imagine Institute.

Another important part of the programme was the lecture of Prof Dr Annemieke Aartsma-Rus, which focused on translational research. She explained different methods how to implement it in rare disorders. Rick Thompson, CEO of Findacure, talked about drug repurposing as a successful strategy for charities for rare diseases, while Dr Ana Rath, director of Orphanet, explained the advantages of this platform in patients’ lives. Julian Isla, patient advocate and father of a child with rare condition, presented an interesting project about an online platform, which can collect patients’ data. In addition to that there were presentations of different initiatives in the field of patient advocacy and clinical research.

Time for action

The end of the EURORDIS Winter School was just the beginning of one important journey in the field of patient advocacy. During the course I have met many wonderful people, who were ready to learn new things and to concrete action. This makes me to believe that together we are stronger as a patient community and we should show that people with rare disorders are valuable members of the society.