EURORDIS Summer School for Patient Advocates

Annamarie Dillon | August 07, 2012

The EURORDIS Summer School for Patient Advocates has been in existence since 2008 providing an educational forum for rare disease patient representatives in the EU to learn to be better stewards of their mission. With a curriculum that is geared to understanding the clinical trial process, drug development and EU regulatory matters, patient representatives can learn about the role that they can play in these processes at both the local and European levels. The EURORDIS Summer School provides an excellent opportunity for patients’ representatives to hone the skills required to move their missions forward.

Held in Barcelona, Spain in conjunction with the Fundacio Doctor Robert, headed by Professor Josep Torrent i Farnell and his team of the Universidad Autonoma de Barcelona (UAB), EURORDIS’ Summer School has also fostered collaboration and networking among the student body. Strong relationships have been created over the years that have successfully benefited the European rare disease community. Being able to interact with one’s peers in the rare disease community is one of the most valuable lessons that can be learned! 

Summer school alumni have praised EURORDIS for illustrating how they can play a role and contribute to the overall European rare disease community especially with regard to research and regulatory activities. The dedicated faculty and staff are constantly impressed with the valuable discussions in and out of the classrooms, which demonstrate the individual experiences of the participants and how they are integrating their new knowledge and trying to apply it to their organization or country.

To learn more about this program, visit or contact Nancy Hamilton ( or Maria Mavris (

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