EURORDIS Summer School for patient advocates




The EURORDIS Summer School was initiated in 2008 as part of our continued commitment to empowering people living with rare diseases. This four-day course provides training in aspects of medicines development and  EU regulatory processes where patients' representatives can be involved.

The EURORDIS Summer School is limited to 40 participants in order to maximise interactions between participants and with trainers.

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

  • French Muscular Dystrophy Association (AFM)
  • Executive Agency for Health and Consumers (EAHC) Operating Grant
  • European Clinical Research Infrastructure Network (ECRIN)
  • DIA Philanthropy Programme (2008 -2010)


The EURORDIS Summer School aims at training patients' advocates in the areas of :

  • Clinical trials
  • Medicines development
  • Regulatory affairs


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 190 participants from more than 30 countries and representing over 70 different diseases. The EURORDIS Summer School is organised in collaboration with the Fundacio Dr. Robert 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 AgencyAFM LogoEMA - European medecines Agency


Developed with the support of:


Logo of Fundacio Robert Inserm Logo

Page created: 28/09/2010
Page last updated: 04/09/2014