EURORDIS Winter School 2019

The second edition of EURORDIS Winter School was an event I have longed for months. The training was about scientific innovations and translational research and was held in the prestigious Imagine Institute in Paris.

I was very happy and honoured to be one of the 30 selected applicants from the 137 that applied. I am now officially a 2019 EURORDIS Winter School Graduate – awarded after a week of intensive training and numerous hours of pre-course online training.

This was an excellent week full of inspirational lectures, interactive sessions between participants and visits to the laboratory and animal facility of the Imagine Institute.

The lecture of Prof Dr Annemieke Aartsma-Rus was focused on translational research on the example of Duchenne muscular dystrophy. Rick Thompson, CEO of Findacure (Findacure is a UK charity that is building the rare disease community in order to drive research) , talked about drug repurposing as a successful strategy for some rare disease charities, while Dr Ana Rath, director of Orphanet, explained the advantages of this platform and how it can be used by scientists and patient groups. Julian Isla, patient advocate and father of a boy with Dravet syndrome, presented an interesting project about an open source artificial intelligence online platform that will be useful in the search for diagnoses. In addition to that there were presentations of different initiatives in the field of diagnoses like Solve-RD project and Genida project lead by Jean Louis Mande. Sessions about gene and advanced therapies on the market by Diego Ardigo and genetic therapies, ERN Eye by Prof Manuel Dominik Fischer were the most interesting ones for me personally. The ERN ITHACA in which RSE is involved was also mentioned and explained by Prof Jill Clayton-Smith, its previous coordinator.

I would like to thank EURORDIS and RSE for this great opportunity to learn more and meet lots of inspirational parents and patients.

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