The training activities for rare disease patient representatives and researchers aim at:
- Providing patient and researchers with knowledge of the therapeutic development and regulatory processes for medicinal products in the field of rare diseases;
- Equipping patient advocates with the knowledge and skills required to become legitimate collaborators in rare disease scientific and translational research;
- Empowering patient representatives in their roles as valued and efficient partners in research and scientific project as well as in European Reference Networks (ERNs);
- Empowering paediatric patients with knowledge, skills and comprehensive educational tools covering some of the main knowledge gaps related to the paediatric developmental specificities.
The training activities offered include:
The EURORDIS School on Medicines Research & Development aims to provide rare disease patient advocates with the knowledge and skills needed to become experts in medicines research and development. Since 2015, researchers also attend the Summer School.
Over 20 experts, representing the various 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.
The EURORDIS School on Medicines Research & Development is made up of one week of face-to-face training preceded by pre-training with webinars and e-learning courses.
It also includes over 28 hours of free online training, which is available for anyone to take on the EURORDIS Open Academy Platform.
The 2023 edition of the EURORDIS School on Medicines Research & Development will take place on 19-23 June 2023 in Barcelona. Registration is currently closed.
The EURORDIS School on Scientific Innovation and Translational Research aims to deepen 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 and co-design projects with stakeholders involved in rare disease research and research infrastructures.
Expert speakers and researchers, from across Europe, deliver the training each year. The topics covered include genetics, diagnostics, genomics, bioinformatics, artificial intelligence, gene therapy and drug repurposing.
The EURORDIS School on Scientific Innovation and Translational Research is composed of one week of face-to-face training preceded by pre-training webinars and e-learning courses.
It also includes over 20 hours of free online training, which is available for anyone to take on the EURORDIS Open Academy Platform.
The 2023 edition of the EURORDIS School on Scientific Innovation & Translational Research will take place on 19-23 June 2023 in Barcelona. Registration is currently closed.
The training for patient advocates on leadership and communication skills empowers European Patient Advocacy Groups (ePAGs) advocates and other rare disease patient advocates to build strong partnerships with, and to be seen as a credible partner in, European Reference Networks (ERNs).
The training programme is composed of webinars and an intensive 2-day course. The topics covered include the building blocks of ERNs, the importance of integrating ERNs into national contexts and how to advocate for that integration, the role of patient advocates in ERNs, communication and leadership skills.
The location of this training programme rotates between Istanbul (Acıbadem Üniversitesi), Rome (Istituto Superiore di Sanità) and Gdansk (Medical University of Gdańsk).
The 2023 edition of the Training for patient representatives and advocates on leadership and communication skills will take place on 26-27 October 2023 in Gdańsk. Registration is now open until April 26th 2023: https://www.ejprarediseases.org/event/training-for-patient-representatives-and-advocates-on-leadership-and-communication-skills-2/.
The Paediatric expert patients training aim at providing young rare disease patients with skills enabling them to get involved in clinical research. The planned activities include short workshops under the coordination of the TEDDY European Network of Excellence for Paediatric Research in collaboration with EURORDIS and the Sant Joan de Déu Research Foundation for 15 paediatric patients focusing on the following areas:
- Genetic /rare disease characteristics and evolution;
- Role for paediatric patients and relevance of clinical and translational research (including patients’ engagement in clinical trials, the consent issue, the patient-reported outcomes in the context of paediatric rare diseases, data protection and children rights);
- Orphan Medicinal Products availability and access for paediatric patients on the EU market, pharmacovigilance and off-label use in paediatric setting.