ExPRESS 2016 Expert Patient and Researcher EURORDIS Summer School



The EURORDIS Summer School began in 2008 as part of a commitment to empowering people living with rare diseases. The five-day training programme covers aspects of medicines development, ethics in medical research and development, regulatory bodies and market access processes where patients and patient representatives take on key roles.

The 2015 version of the Summer School was held from 1-5 June, 2015 in Barcelona, Spain. Expert patient representatives, researchers and trainers from patient organisations, research institutes and the European Medicines Agency joined together to take part in a new version of the Summer School called “ExPRESS 2015”, which stands for Expert Patient and Researcher EURORDIS Summer School.

The dates for the 2016 Summer School will be July 11 through 15, and the application procedure will begin in mid-September 2015. Participants will be selected in January 2016.

The Summer School is an annual initiative created by EURORDIS in 2008 and financed by the:

  • 2008 to 2010 DIA Philanthropy Programme 
  • 2008 to 2015 French Muscular Dystrophy Association (AFM)
  • 2008 to 2015 Inserm
  • 2008 to 2015 Fundació Doctor Robert UAB
  • 2008 to 2015 Executive Agency for Health and Consumers (EAHC) Operating Grant
  • 2012 to 2015 European Clinical Research Infrastructure Network (ECRIN)
  • 2013 to 2015 Platforma Malalties Minoritaries
  • 2015 Cost Action Exon Skipping BM1207


The EURORDIS Summer School trains patients' advocates in the areas of :

  • Clinical Trials Methodology
  • Statistics in Clinical Research
  • Ethical Considerations in Medicines Development
  • Regulatory affairs
  • Health Technology Assessment
  • Marketing Authorisations


This training builds participants' capacities to act as experts in regulatory processes and further their implication in medicines development and advocacy actions both at the national and European levels. 

An annual event in Barcelona

Every year the Summer School is held in Barcelona, Spain, and to date has welcomed over 270 participants from more than 37 countries and representing over 70 different diseases. The EURORDIS Summer School is organised in collaboration with the Platforma Malaties Minoritaries and Professor Josep Torrent i Farnell and his team at the Universidad Autonoma de Barcelona. 

Participants are selected by an ad hoc committee according to their level of English language skills, their advocacy experience, and their willingness to be involved in medicines development and regulatory affairs at the European level.

In this unique training course tailored for EU patients' representatives, the material is developed and presented by experts from academia, regulatory agencies and patients' advocates, with extensive experience in their field. 

Positive results, greater understanding, further involvement



Summer School alumni report an increased awareness of the importance of their involvement in all aspects of medicines development and of their potential to be a real force. Participants also recognise the need for patients' organisations to collaborate internationally  as well as the importance of involvement in the activities of the European Medicines Agency (EMA) and EURORDIS. The training experience reinforces participants' sense of community, and increases their individual capacities.

Freely available on-line modules extend the content of the Summer School by providing recordings of all presentations and an e-learning tool  in clinical trial methodology, statistics and ethics. 


The EMA and Summer School

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) (2006)
  • Paediatric Committee (PDCO) in 2008
  • Committee for Advanced Therapies (CAT) in 2009
  • Pharmacovigilance and Risk Assessment Committee (PRAC) in 2012


Patients' representatives are also frequently solicited as experts 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).

In addition to these regulatory activities, patients' representatives are involved in:

  • Advocating for medicines development
  • Ensuring clear information for patients
  • Attempting to achieve equal access to treatments both at European and national levels


EURORDIS, which has permanent representatives in the EMA Scientific Committees (COMP, PDCO, CAT and working parties) recognised a need to provide support to these patients' advocates. A training course providing an overview of clinical trials, medicines development and regulatory procedures was identified as an essential tool to address these needs - hence the EURORDIS Summer School was born.

For more information about EURORDIS Summer School please contact Nancy Hamilton

The EURORDIS Summer School for Patient Advocates is made possible thanks to the generous support of:

                                                                                                                    Logo of the EC Health and Consumers Executive Agency

       EMA - European medecines Agency       


Developed with the support of:




Page created: 28/09/2010
Page last updated: 20/07/2015
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