EURORDIS Summer School

The EURORDIS Summer School on Medicines Research & Development is made up of one week of face-to-face training, held in June in Barcelona, and the training modules below, which are available for anyone to use for free.

Summer School group picture

EURORDIS Summer SchoolThe EURORDIS Summer School aims to provide rare disease patient advocates with the knowledge and skills needed to become experts in medicines research and development. Since 2015, researchers are also welcome to attend the Summer School.

Over 20 EURORDIS Summer School trainers provide the training each year.

The EURORDIS Summer School training covers topics including: clinical trials methodology, clinical research, ethics in medicines development, regulatory affairs, health technology assessment and marketing authorisation.

The first edition of the EURORDIS Summer School took place in June 2018, in Barcelona.

Next face-to-face training

The 2020 edition of the EURORDIS Summer School took place on 8-12 June 2020, exceptionally online, due to the COVID-19 pandemic. The applications for this training are now closed.

Ahead of the face-to-face training in Barcelona, participants are invited to take part in a pre-training course and complete the online modules listed below.

Take part in free online training

The free online modules are available for anyone to use at a time and place that is convenient.

Before you start, you may want to have a look at the following Glossary document, which covers key terms in Methodology, Ethics, Statistics, Pharmacology and Regulation.
[▼] Download Glossary

The conditions of use for all EURORDIS training modules have been licensed with Creative Commons. More information on the conditions of use.


Unit 3: Statistics in medicines research and development

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Unit 4: Benefit-risk assessment and pharmacovigilance

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Unit 5: The European Medicines Agency (EMA)

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Unit 6: Medical Regulatory Framework and Procedures

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To date, more than 400 participants from over 40 countries representing more than 75 diseases have participated in the EURORDIS Summer School.

Thanks to capacity-building provided by EURORDIS, alumni members have gone on to become involved in various activities at the European Medicines Agency (EMA), such as Protocol Assistance, and to participate in activities related to the European Network for Health Technology Assessment (EUnetHTA).

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 at European and national level.

History of the EURORDIS Summer School

The Summer School was originally developed to fill specific needs identified by expert patients, EURORDIS and the European Medicines Agency.

Expert patients from EURORDIS are permanent representatives on EMA Scientific Committees and working parties, for example, the Committee for Orphan Medicinal Products, the Patients’ and Consumers’ Working Partyand the Scientific Advice Working Party.

EURORDIS therefore created the Summer School in recognition of patients’ need for support and training that includes an overview of clinical research and methodology, medicines development and regulatory procedures.

Financial support

The EURORDIS Summer School 2019 has received funding under an operating grant from the European Union’s Health Programme (2014-2020) and under the European Union’s Horizon 2020 Research and Innovation Programme, notably under the HTx project (grant agreement Nº 825162) and under the European Joint Programme on Rare Diseases (grant agreement N°825575).

Financial support is also provided by AFM-Téléthon, the French Muscular Dystrophy Association, and by the European Clinical Research Infrastructure Network (ECRIN).