5th EURORDIS Summer School for Patient Advocates

This year in the heat of the June sun in Barcelona, patients' representatives gathered once again to learn about clinical trials, drug development and the regulatory processes in Europe in the context of the EURORDIS Summer School. These enthusiastic individuals represent 28 diseases (such as alternating hemiplegia, acute porphyria, Lowe syndrome, ectodermal dysplasia and rare cancers) and 15 countries (including Iceland, South Africa, Netherlands, Poland, Ukraine, France, United Kingdom to name a few).

At the conclusion of this edition (June 18-21), a total of 153 patients’ representatives will have been trained via the Summer School. This total represents 31 different countries and more than 65 different diseases. Since its inception in 2008, Summer School alumni have gone on to participate in regulatory processes at the European Medicines Agency, received fellowships to attend the DIA Euromeeting, become involved in National Plans for Rare Diseases and have been empowered to participate more at their national as well as the European level. The growing awareness of this training for patients’ representatives has led to its extension from 2012 to non-rare disease patients, via the ECRIN project, and will be further expanded in the context of the EUPATI project.


Once again with the commitment and support of our dedicated faculty, 37 participants returned home with a bag full of information, a renewed sense of community and motivation to continue their journey to improve the situation for patients everywhere.


Find out more about EURORDIS Summer School and other training resources on clinical trials, drug development and the regulatory process in Europe.

Page created: 11/07/2012
Page last updated: 08/10/2012
The voice of rare disease patients in EuropeEURORDIS The international voice of people living with rare diseasesRare Disease International Bringing together patients, families and experts to share experiences in a moderated multi-language forum. RareConnect The Rare Barometer Programme is a EURORDIS initiative that carries out surveys to transform rare disease patients' experiences into figures and facts that can be shared with decision-makers.Rare Barometer An international awareness raising campaign taking place on the last day of February each year, Rare Disease Day is a EURORDIS initiativeRare Disease Day Join the largest gathering of rare disease stakeholders across Europe, at the biennial European Conference on Rare Diseases and Orphan Products. ECRD is a EURORDIS initiativeEuropean Conference on Rare Diseases