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EURORDIS Summer School participants get a step ahead with pre-course training module

June 2014

Participants at EURORDIS Summer School

A pre-course training module

The seventh EURORDIS Summer School convened in sunny Barcelona on 2-6 June 2014 with a rich agenda designed to build capacities in the area of medicines development. An updated online pre-Summer School training module was on offer this year, providing participants with information related to non-clinical aspects of medicines development as well as helping to familiarise them with some of the concepts and vocabulary related to topics to be covered. The Summer School uses a blended learning approach that combines face-to-face learning with online tools, including the new pre-training module as well as three previously developed modules on Ethics, Statistics and Clinical Methodology which are all freely available on the EURORDIS website.

New Sessions and New trainers in 2014

Health Technology Assessment (HTA), re-introduced this year and presented by Edmund Jessop, was particularly appreciated by the “Summer Schoolers”. Other highlights include a presentation of the EMA’s Patient and Consumers Working Party (PCWP) by Lise Murphy (who represented EURORDIS on the PCWP from 2007 to 2013). Albert van der Zeijden, the patient representative member of the EMA Pharmaceutical Risk Assessment Committee (PRAC), gave a presentation on the PRAC for the first time.

Empowering people living with a rare disease

The EURORDIS Summer School was created for patients and patient representatives to become more empowered, enabling them to understand where they could be involved in activities at the local and European levels. EURORDIS alumni participate in scientific committees at the European Medicines Agency (EMA) and engage in the review of applications for orphan designation and advanced therapy classification in as well as review of documents destined for the public and participation in scientific advice (protocol assistance). Five of the 10 EURORDIS-EUROPLAN advisors have attended the Summer School

This year’s Summer School brings the total trained to 227 participants, representing 34 different countries and 75 different diseases. Ten of the participants attended thanks to support from the ECRIN IA project that funds rare disease, medical device and nutrition related patients to the Summer School.

An occasion for networking

Networking was particularly strong amongst participants this year and EURORDIS has several resources for alumni to stay connected, including EURORDIS social media, subscription to the EURORDIS newsletter, which is available in seven languages, monthly reports on activities at EMA, the communities, the annual EURORDIS Membership Meeting and the biennial European Conference of Rare Diseases and Orphan Products (ECRD). The excellent contributions from the course presenters and the warm camaraderie amongst all participants made the EURORDIS Summer School once again a fruitful and productive experience.

For more information, contact Nancy Hamilton ( or Virginie Hivert (