Share4Rare toolkit for patient advocacy


Educational programs

Some countries have training programmes which are specifically designed for patient advocacy. In Europe, the best-known programmes for rare diseases are EURORDIS Open Academy and Summer and Winter schools and European Patient Academy - EUPATI, which cover all diseases and are focused on increasing the capacity and capability of patients to understand and contribute to medicines research and development


EURORDIS is a non-governmental patient-driven alliance of patient organisations representing 812 rare disease patient organisations in 70 countries. The organisation aims to improve the quality of life of people living with rare diseases in Europe through advocacy at the European level, support for research and medicines development, facilitating networking amongst patient groups, raising awareness, and many other actions designed to reduce the impact of rare diseases on the lives of patients and family.

The Summer School is made up of one week of face-to-face training.

The training aims to provide participants with the knowledge and skills needed to become experts in medicines research and development. The EURORDIS Summer School training covers topics including clinical trials methodology, clinical research, and ethics in medicines development, regulatory affairs, health technology assessment and marketing authorisation.

The Winter School launched by EURORDIS with the aim of deepening patient representatives’ understanding of how pre-clinical research translates into real benefits for rare disease patients.

The training equips participants with knowledge and skills so they are empowered to effectively participate in discussions with the researchers, policymakers and companies responsible for research or research infrastructures.

The first edition of the face-to-face training of the EURORDIS Winter School was held in March 2018 in Paris.  It covered topics including the history of genetics, diagnostics, new technologies in gene therapy, and drug repurposing and included laboratory visits.


The European Patients’ Academy (EUPATI) is a pan-European project implemented as a public-private partnership by a collaborative multi-stakeholder consortium from the pharmaceutical industry, academia, not-for-profit, and patient organisations. EUPATI focuses on education and training to increase the capacity and capability of patients to understand and contribute to medicines research and development and to improve the availability of objective, reliable, patient-friendly information for the public.

The EUPATI Expert Training Course is an exciting and unique opportunity offering to patients and patient advocates expert-level training in medicines research and development. The course is a mixture of independent e-learning coursework and face-to-face training events over a 14-month period.

Investigate such opportunities if they are available to you in your country to further enhance your efforts. Eg. Université des Patients in France.


Last modified
02 February 2021
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Access to COVID-19 vaccination in people with rare diseases