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January 2013

Patients’ representatives learn to take an active role in rare disease initiatives via the EURORDIS Summer School


EURORDIS Summer School sessionThe sixth edition of the EURORDIS Summer School will be held this June. Covering all areas of the medicine development process, including the dynamics of clinical trials and regulatory affairs, the EURORDIS Summer School programme is divided into comprehensive modules, designed to provide a solid understanding of the essential elements on how medicinal products are discovered, developed and regulated in Europe. What began as a one-time initiative to train patients’ representatives, has become an important annual event on the EURORDIS calendar. As in previous years, this summer’s English-language course will be held in June in Barcelona, Spain, in collaboration with colleagues from the health training institution Fundacio Doctor Robert.

To date more than 150 patients’ representatives representing 65 different diseases and 31 countries have participated in the EURORDIS Summer School. For a complete list of previous attendees, please visit www.eurordis.org/content/eurordis-summer-school-alumni. After participating in the Summer School training, some alumni have gone on to act as full members of scientific committees or have participated in regulatory procedures such as protocol assistance at the European Medicines Agency. Many alumni have also gotten involved in conferences, such as the EURORDIS Conference on Rare Diseases and Orphan Products or the DIA EuroMeeting. Others have become implicated in their country’s EUROPLAN project for the development of a national strategy for rare diseases.

Recordings of the previous EURORDIS Summer School course presentations are available on the EURORDIS website along with online learning tools that can expand and test your knowledge in a variety of subjects, such as methodology, statistics and ethics.

If you are interested in attending the EURORDIS Summer School, the deadline for applying is 28 February 2013 and applications can be found on the EURORDIS website.

 

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