Train to become an expert in medicines R&D
Patients are taking on an ever-increasing role in advocating for improved medicines development and faster, equal access to treatments across Europe.
Expert patients participate as patient representatives at the European Medicines Agency’s Committee for Orphan Medicinal Products, Paediatric Committee, Committee for Advanced Therapies, the Pharmacovigilance and Risk Assessment Committee, and the Patients’ and Consumers’ Working Party.
To help patient advocates prepare for such roles, EURORDIS launched its own Training Programme in 2008.
The Programme enables patients and researchers to sharpen their advocacy skills and gain an understanding of the regulatory process for rare disease medicinal products so that they can go on to advocate at European and international levels.
Expert Patient and Researcher EURORDIS Summer School
At the centre of this Training Programme is the Expert Patient and Researcher EURORDIS Summer School (ExPRESS), which takes place every summer in Barcelona. Participants travel from all over the world to take part in the 4-day intensive training, led by the EURORDIS Summer School trainers.
From 2008 to 2016, 300 patient representatives and 22 researchers from over 40 countries and representing more than 75 diseases have participated in the EURORDIS Summer School. In 2015, the Summer School began welcoming researchers as participants, as well as patient advocates, to facilitate networking and exchange between patients and researchers on their different experiences and needs of the medicines development process. Over 30 patient representatives and 10 researchers participated in the 2016 Summer School. EURORDIS Alumni can also join the RareConnect.org discussion group to take part in discussions on how they are putting their training into practice.
The next Summer School will take place in June 2017 in Barcelona. The application procedure will launch in the coming weeks. Please email Nancy Hamilton, EURORDIS Training Manager nancy.hamilton@eurordis.org if you are interested in receiving information on how to apply once the application process has opened.
In 2016, a pre-training programme was added to the Summer School to allow trainees to familiarise themselves with the concepts and terminology that will be used during the on-site course in Barcelona. The pre-training is made up of seven online training units, each with individual webinars and quizzes that trainees can view at their own pace.
Online training
As part of the Training Programme, EURORDIS has also developed an online Training Resources Centre. If you are interested in learning more about the medicines development process in Europe, you can access free webcasts and slideshows on medical research, ethics, the regulatory framework, the European Medicines Agency, benefit-risk and pharmacovigilance, market access, and other various patient-related topics.
European Patients’ Academy Toolbox
Further online training is also available via the European Patients’ Academy (EUPATI) toolbox, launched earlier this year. EURORDIS was instrumental in developing content for this toolbox, some of which was came from EURORDIS training materials, and similarly played an important role in lending expertise and developing content for the EUPATI Expert Training Course.
The content for the toolbox, which covers medicines development from “A to Z”, is available in seven different languages and encourages users to discover, adapt and share knowledge and experiences. Content is also mobile, tablet and desktop accessible, fully downloadable and printable so that you can easily share tools with other patients.
You can also access an online EUPATI glossary of all terms relevant to medicines development.
Eva Bearryman, Communications Manager, EURORDIS