EURORDIS Training Resources Centre

"Empowering Patients, Inspiring Action"

The Centre’s training programme and resources are designed to strengthen the capacity of rare disease patient representatives. Training helps to empower patient representatives to advocate effectively for rare diseases at both local and international levels. 

The training programme employs a blended learning approach of different online formats as well as face-to-face training. All content is freely available to anyone with an interest in patient advocacy. They can be used at a time and place that is convenient for both Patients and Carers. The content is organised by themes. We suggest completing the programme in the following order: 1) Medical Research, 2) Ethics, 3) Regulatory Framework, 4) European Medicines Agency, 5) Benefit-Risk Assessment & Pharmacovigilance, 6) Market Access 7) Other Patient Related Content.

The Summer School section provides information on how to apply to attend the annual 4.5-day full-immersion face-to-face training course on medical research, development, and regulation as well as product safety, market access for patient experts and researchers.

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


Summer School

A new format was developed for the Summer School in 2015 that combines training for both expert patients and researchers on medicines development.


Pre-Summer School Training Module

Overview of the topics that are covered at the Summer School as well as exercises and quizzes to familiarise trainees with some of the key concepts and issues presented


Medical Research

In this section you will be able to learn more about the medicines discovery process, preclinical testing, clinical trials, and methodology and statistics used in medicines development.



Learn more about the important role of ethical considerations and ethics committees in medicines research and development.


Regulatory Framework

In this section, you can learn about regulatory affairs including legal framework, guidelines and Health authorities’ requirements that influence the medicines development process.


European Medicines Agency (EMA)

This section explains how the EMA protects and promotes public health through its committees and working parties, and how patient representatives can get involved.


Benefit-Risk Assessment and Pharmacovigilance

This section explains how medicines are evaluated to ensure their benefit outweighs their risk and to limit any untended, harmful effect on the body.


Market Access

In this section you will learn about pharmacoeconomics and the process by which a company gets a medicinal product to market so that it becomes available for patients.



This section focuses on practical topics for patient advocates and includes presentations on projects which EURORDIS partners and which promote patient involvement.

The voice of rare disease patients in EuropeEURORDIS The international voice of people living with rare diseases, Rare Diseases International is a EURORDIS initiativeRare Disease International Bringing together patients, families and experts to share experiences in a moderated multilanguage forum, RareConnect is a EURORDIS initiative RareConnect An international awareness raising campaign taking place on the last day of February each year, Rare Disease Day is a EURORDIS initiativeRare Disease Day Join the largest gathering of rare disease stakeholders across Europe, at the biennial European Conference on Rare Diseases and Orphan Products. ECRD is a EURORDIS initiativeEuropean Conference on Rare Diseases