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All aboard the EURORDIS ExPRESS 2015!

October 2014

EURORDIS Summer School participants

ExPRESS 2015 is the name of the exciting new programme for the upcoming annual EURORDIS Summer School. ExPRESS, which stands for Expert Patients and Researchers EURORDIS Summer School, will gather for the first time both researchers and patient representatives who will be trained together. The trainers are from patient organisations, research institutes and the European Medicines Agency. The four-day training programme develops the capacity of patients’ advocates to act as experts in regulatory processes and further their implication in medicines development and advocacy actions both at the national and European levels.

Applications now open

ExPRESS 2015 will take place from 1-5 June, 2015 in Barcelona, Spain, and applications are now open. Please note that the deadline is 8 December, 2014. The exciting new programme focuses on information and access to orphan, paediatric, and advanced therapies and health technology assessment and includes modules on evidence based medicine, therapy development for ressearchers, patient involvement in regulatory committees and working parties at the European Medicines Agency, and much, much more. One of the key sessions in 2015 will address the importance of Scientific Advice in the regulatory process.

The Summer School is an initiative created by EURORDIS in 2008 to train patients’ advocates in medicines development and regulatory affairs. Participants are selected by an ad hoc committee according to their English language skills, advocacy experience, and willingness to be involved in medicines development and regulatory affairs at the European level. Training, travel, accommodation and meal expenses for patients’ advocates are covered by EURORDIS thanks to financing from, amongst others, the French Muscular Dystrophy Association (AFM), Executive Agency for Health and Consumers (EAHC) Operating Grant, European Clinical Research Infrastructure Network (ECRIN), and for the first time in 2015, a COST Action on Exon Skipping. Funding from COST allows the 15 researchers to join the ExPRESS 2015 Summer School and share and exhange experiences with participants during the four-day training programme.

ExPRESS yourself

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.

On-line modules, freely available to anyone interested, extend the content of the Summer School through recordings of all presentations and interactive e-learning tools in clinical trial methodology, statistics and ethics. 

For more information please contact Nancy Hamilton.

Louise Taylor, Communications and Development Writer, EURORDIS