The training activities for rare disease patient representatives and researchers aim at:

  1. Providing patient and researchers with knowledge of the therapeutic development and regulatory processes for medicinal products in the field of rare diseases; 
  2. Equipping patient advocates with the knowledge and skills required to become legitimate collaborators in rare disease scientific and translational research; 
  3. Empowering patient representatives in their roles as valued and efficient partners in research and scientific project as well as in European Reference Networks (ERNs); 
  4. 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: