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Eurordis - Rare Disease Europe

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 free e-learning modules below, available on demand.

Summer School group picture

The 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 experts, from across all rare disease stakeholders, deliver the training each year. The topics covered include clinical trials methodology, clinical research, ethics in medicines development, regulatory affairs, health technology assessment and marketing authorisation.

Next Summer School training

The last edition of the EURORDIS Summer School took place 6-10 June 2022 in Barcelona. Applications to the Summer School 2023 haven’t opened yet.


Take part in free online training

Learn more about medicines research and development at a time and place that suits you! Take the free e-learning courses below.

The conditions of use for all EURORDIS e-learning courses have been licensed with Creative Commons. More information on the conditions of use.

Before you start, you may want to download the following Glossary document, which covers key terms that you will find in the different courses below:
[▼] Glossary on Methodology, Ethics, Statistics, Pharmacology and Regulation

[▼] List of acronyms (2018)

We also advise you to download this compilation elaborated by the European Medicines Agency (EMA) containing plain-language descriptions of medical terms commonly used in information about medicines:
[▼] EMA Medical Terms Simplifier



Course 1: Medical Research and Development

⌛️ 5h45m


Course 2: Ethics in Medicines Development

⌛️ 4h45m


Course 3: Statistics in medicines research and development

⌛️ 3h


Course 4: Benefit-risk assessment and pharmacovigilance

⌛️ 2h 45m


Course 5: The European Medicines Agency (EMA)

⌛️ 4h45m


Course 6: Medical Regulatory Framework and Procedures

⌛️ 2h30m


Course 7: Market access & HTA

⌛️ 4h30m


About the EURORDIS Summer School

  • Alumni

    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 first Summer School was launched in 2008 and 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 Party and the Scientific Advice Working Party.

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

  • Financial support

    The EURORDIS Summer School 2021 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 the European Clinical Research Infrastructure Network (ECRIN).

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