In this week’s blog Rick tells us all about his day-long visit to the Eurordis Winter School in Paris, where he gave a talk on drug repurposing as a strategy for rare disease patients.

Eurordis is the European body that represents patient organisations across the European Continent. While representing the views and needs of Europe’s rare disease population is a huge part of their work, they also deliver a wide range of training programmes and patient facing projects to help the continent’s patient groups grow. The Eurordis Winter School is one of their newer projects, held for just its second year this month. The Winter School aims to provide patient advocates with an understanding of scientific research. This should help them to engage more effectively with the research community, to communicate science to their own patients, and potentially to begin to drive research forward in their own conditions.

I was fortunate enough to be invited to speak at the inaugural Winter School in 2018, and I’m pleased to say that Eurordis invited me back for a second round this year. The audience was made up of over 30 representatives from patient groups across Europe, all taking part in the week-long training event. Throughout the week they heard talks on the history of genetics, rare disease diagnoses, the use of data in research, animal research and gene therapies, to name but a few.

My goal was to help the patient groups understand drug repurposing for rare diseases – hopefully highlighting why it is a strategy worth pursuing, and how they could begin to get involved in the process. This firstly involved an hour long lecture that gave insights into the methods available to identify repurposing opportunities, examples of rare disease repurposing research, and the things consider when trying to implement a drug repurposing programme as a patient organisation. After that the audience broke into small groups and we discussed the challenges that each of their societies face in research, how they could influence the research agenda, and their own experiences with drug repurposing and off-label prescription of medicines. It was one of the most engaged and interested audiences I have ever spoken in front of, and it was a real pleasure to share some of my thoughts with them all.

Thanks to Eurordis for having me, and all of the amazing students for making such an interesting and rewarding experience.

If your patient organisation is interested in being involved in the Eurordis Winter School visit their website to learn more. Findacure will make sure we let you know when applications open for the 2020 project.