Eurordis - Rare Disease Europe

Get Involved: Patient Training on Medicines Research and Development

Current EUPATI Training Course participant Dimitris Athanasiou with his son

The European Patients’ Academy on Therapeutic Innovation (EUPATI) project is designed to inform, educate and train patients on medicines research and development. The involvement of patient representatives in the design and organisation of all EUPATI activities ensures that the project is effectively run for the benefit of patients. EUPATI is a European Commission project and is funded for five years through an Innovative Medicines Initiative partnership.

The European Patients’ Academy is a team of 30 organisations including patient advocacy groups and not-for-profit organisations such as EURORDIS, which aims to inform patients on areas relevant to medicines development including clinical trials, medicines risk assessment and market access. The European Patients’ Academy targets three audiences by:

1. Providing general information via the EUPATI website to patients who are not involved in advocacy, carers or the general public, all of whom may have an interest in, but limited or no knowledge of medicines development.
2. Educating patient group advocacy leaders. This is done through the provision of an online toolbox that includes webinars and content for teaching others.
3. Running the EUPATI Training Course for Patient Experts in Medicines Research & Development.

The Training Course helps patients and patient organisation representatives increase their capacity to become effective advocates and advisors so that they can be involved in the medicines research and development process. For example, the training can equip a patient advocate with the skills needed to work in a regulatory committee or to become a member of an ethics committee.

The course, which is taught in English and fully funded by scholarships, is run via e-learning modules and also includes two face-to-face sessions. EURORDIS is involved in the development and organisation of these two sessions.

Dimitris Athanasiou, patient representative from Parents Project Duchenne MDA HELLAS, current EUPATI Training Course participant, EURORDIS Summer School alumni and EMA-listed patient expert, commented, “The need for patient experts and advocates is more important than ever in the field of rare diseases with all the fast-moving developments in drug research. I realised that if I wanted to help my son, who is living with Duchenne muscular dystrophy, I needed to get an in-depth training to enable me to advocate to national & EU authorities. To accomplish this I needed to acquire new expertise in regulatory and drug development processes and to learn how patients are involved in these processes at both a national and EU level.”

Dimitris added, “I first became empowered as a patient advocate with the help of the EURORDIS Summer School. I feel it is important to do such training because we, as patient advocates, need to have a strong, well-informed voice to be able to negotiate or engage in effective conversation with regulators, industry or academia. I then decided to apply for the EUPATI course, which has been a great opportunity to further develop my skills over a longer period of time”.

To Apply

You can find information on how to apply for the 2015 – 2016 EUPATI Training Course by visiting the website. Patient organisation employees, patients with chronic illnesses (including rare diseases) and family members of such patients are all eligible to apply. Further details on eligibility and a breakdown of the course modules can be found in the EUPATI Guide for Applicants. You can also read the EUPATI blog here.

Several EUPATI Training Course participants have also taken part in the EURORDIS Summer School. The next edition, the ExPRESS (Expert Patient and Researcher EURORDIS Summer School), will take place from 1 – 5 June in Barcelona. For the first time, researchers will also take part alongside rare disease patient representatives. The ExPRESS will build participants’ capacities to act as experts in regulatory processes so that they can further their involvement in medicines development. It is more focused on rare diseases and could be another option for patients who may not be able to commit to the longer EUPATI Training Course. Funding partners for this year’s Summer School include the COST Action Exon Skipping BM1207 and the European Clinical Research Infrastructure Network (ECRIN).

EURORDIS also provides a free, openly available e-learning course on medicines development.

Eva Bearryman, Junior Communications Manager, EURORDIS