One key objective of the EJP RD is to better inform and train the rare disease community as well as increase awareness and interest on rare disease research from students.
To this end, an educational academic course on transversal and multidisciplinary aspects of rare diseases research open to all stakeholders is being developed as a fully online format.
This course foresees the development of 5 MOOCs (Massive Open Online Courses).
The first MOOC of the series focuses on Diagnosis and is available here.
The MOOC #3 on Introduction to Translational Research for Rare Diseases is available here.
EJP RD MOOCs are free and open to anyone, although there are designed for individuals with a prior interest in rare diseases research, especially postgraduate students and medical students.
Patient advocacy representatives and advocates as well as health professionals who want to deepen their knowledge in rare diseases research could also find the MOOCs of interest.
Description of work & results
Back in 2019, the main task first consisted in assessing the needs, the target audience and the main topics of the academic education course.
The needs of an EU-wide community were surveyed through a comprehensive survey sent in April 2019 to more than 900 European Healthcare Providers, members of the European Reference Networks (ERNs).
To refine and spread out the specific online training needs, a second survey was developed and disseminated from early June till mid-July 2019.
You can find the results from the online training survey here
Ongoing and future tasks
The first MOOC “Diagnosing rare diseases: from the clinic to research and back” is available here.
The MOOC #3 “Introduction to Translational Research for Rare Diseases” is available here.
Two additional MOOCs are currently under development and will be made available through the FutureLearn online platform in 2022 and 2023.
Stay tuned for updated information.
For more information, please contact: Magda Granata