EURORDIS Expert Patients and Researchers Summer School 2018

Patients are taking on ever increasing roles in advocating for medicines development, equal access to treatments across Europe, and ensuring that medical information is clear, accurate, and comprehensible. In order to help prepare them for these roles and as part of its commitment to empowering people living with rare diseases, EURORDIS launched its own training programme for expert patients in 2008.

The programme allows patients and researchers to sharpen their advocacy skills and gain an understanding of the regulatory process of therapeutic development so that they are able to advocate at a European level.

The programme has online and face-to-face components. The face-to-face portion trains a group of expert patients annually as part of an intensive 4.5-day course held in Barcelona, Spain.

The Summer School was developed to fill specific needs identified by expert patients, EURORDIS, European Medicines Agency, academic researchers and industry. Expert patients from EURORDIS are involved as representatives on EMA Scientific Committees and working parties. EURORDIS recognises their need for support and training that includes an overview of clinical research and methodology, medicines development and regulatory procedures.

In 2000, the Committee for Orphan Medicinal Products (COMP) was formed at the European Medicines Agency (EMA) and the European authorities had the foresight to include patients’ representatives as permanent and full members with equal voting rights. Three patients’ representatives sit on this committee and the position of Vice-Chair of the COMP has to date always been held by a patients’ representative.

Since this time, a working party and three more scientific committees have been created, all of which include patients’ representatives:

Patients’ and Consumers’ Working Party (PCWP) in 2006

Paediatric Committee (PDCO) in 2008

Committee for Advanced Therapies (CAT) in 2009

Pharmacovigilance and Risk Assessment Committee (PRAC) in 2012

Expert Patients are also frequently solicited for their input on the development of specific products for their disease, e.g.; via the process of Protocol Assistance with the Scientific Advice Working Party (SAWP).

2018 Eurordis Summer School onsite programme

Course Content

Chapters Status

Chapter 1 Monday June 11, 2018


Chapter 2 Tuesday June 12, 2018


Chapter 3 Wednesday June 13, 2018


Chapter 4 Thursday June 14, 2018


Chapter 5 Friday June 15, 2018