ExPRESS 2015 Expert Patient and Researcher EURORDIS Summer School

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The EURORDIS Summer School began in 2008 as part of a commitment to empowering people living with rare diseases. The training programme covers aspects of medicines development and EU regulatory processes where patients' representatives can actively take on key roles.

The 2015 version of the Summer School will be 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 will join together to take part in a new version of the Summer School called “ExPRESS 2015”, which stands for Expert Patients and Researchers EURORDIS Summer School.
Below you will find links to the Message for applicants, the Programme, and the Application form. Please note that the deadline is 8 December, 2014.

Programme
Application form (PDF)
Application form (Word)
Letter for applicants
Highlights of the Seventh EURORDIS Summer School

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 227 participants from more than 30 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 Hamiltonnancy.hamilton@eurordis.org

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