The Voice of Rare Disease
Patients in Europe
Patients & researchers team up at the EURORDIS Summer School 2016
The 2016 ExPRESS Expert Patient and Researcher EURORDIS Summer School recently brought together over 80 participants and speakers to learn about the medicines development process and how patients can get involved.
Participants travelled from all over Europe and as far as India to take part in the 5-day training in Barcelona. Presentations given at the 2016 Summer School are available here. The 2016 Summer School was dedicated to the memory of Emil Augustin (19/02/2014-08/05/2016).
Why a EURORDIS Summer School?
Patients are taking an ever-increasing role in advocating for medicines development, equal access to treatments across Europe and clear, accurate and comprehensible medical information. In order to help prepare for this role, and as part of a commitment to empower people living with a rare disease, EURORDIS launched its own training programme for expert patients in 2008.
As of 2015, the Summer School now welcomes researchers as participants, as well as expert patients. There are over 400 EURORDIS Summer School alumni to date.
One of the programme’s main aims is to help patients and researchers gain an understanding of the regulatory process of orphan medicinal products so that they are able to advocate at a European level.
Get involved online!
You can get involved in EURORDIS’ training on medicines development for free and at a time that suits youby making the most of online training resources:
- Ahead of the annual week of training in Barcelona, participants are invited to take part in a pre-training module online (free, open access to all).
- The EURORDIS Summer School forms part of the wider EURORDIS Training Programme, which also includes free online training modules on:
Veronica Popa, an avid patient advocate and mother of Andreas-Rares who is living with Allan-Herndon-Dudley syndrome, participated this year, "The Summer School was an enlightening experience. All of the information we received through the pre-training came together in Barcelona like pieces of a puzzle to create a bigger, better picture of our environment and of how we, as patient advocates, can make a difference. It opened gates that seemed locked, offered different perspectives and gave us the tools to open the remaining locked gates. On a personal level, it helped me to see how to break isolation by networking with other patients and researchers".
Anne-Charlotte Fauvel, EU Coordinator at EATRIS, also attended, “As a representative of a research infrastructure, it was very inspiring to participate in the training alongside expert patients and see how complementary our viewpoints can be. The Summer School is a precious opportunity for researchers to have in-depth exchange with patients and to stimulate discussions on how to keep collaborating further. EATRIS has since been in touch with three expert patients from the Summer school and invited them to share their experience during a training course for researchers”.
Apply for the 2017 EURORDIS Summer School
The application process will open from September 2016. News on how to apply will be posted here in the coming months. For more information on the EURORDIS Summer School please contact Nancy Hamilton:firstname.lastname@example.org.
Eva Bearryman, Junior Communications Manager, EURORDIS