The trainings for patients & researchers aim to provide:  

  • An understanding of therapeutic development and regulatory processes for medicinal products in the field of rare diseases for patients and researchers 
  • The knowledge and skills required for patients to become legitimate collaborators in RD scientific & translational research 
  • Empowerment of patient representatives in their roles as equal, valued, and efficient partners in research and scientific project/ERNs governance bodies 
  • Appropriate methods in the empowerment process of the pediatric patients to provide them with knowledge, skills and educational comprehensive tools covering some of the main knowledge gaps related to the pediatric developmental specificities 

 

The training activities offered in this module are: 

  • ExPRESS Expert Patients and Researchers EURORDIS Summer School (EURORDIS Summer School)**. The programme has online (available for free to anyone) and face-to-face training components (4.5-day course held in Barcelona, Spain) 
  • Training for patient advocates on scientific innovation and translational research aspects in rare diseases (EURORDIS Winter School)**. The programme has online (available for free to anyone) and face-to-face training components (4.5-day course in Paris, France) 
  • Training for patient representatives and advocates on leadership and communication skills (EURORDIS Leadership School)**. The programme is delivered through a mixed format of webinar-based interactive learning and a series of annual face to face 2-day workshops taking place in Barcelona, Gdansk, Istanbul and Rome between 2019 to 2022. 
  • Educational materials and activities for pediatric patients (TEDDY Network, from 2021 onwards).  The programme has face-to-face components (3-days course). 

All training courses are open to all and offered free of charge for all EU patient participants and accommodation provided to patient representatives** (selection criteria apply).
In addition, 10 to 15% of selected participants will be offered travel fellowships to enable a more equitable level of participation among the EU-13 countries.