Online Academic Education Course

Objective
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 4 MOOCs (Massive Open Online Courses).

The MOOC “Diagnosing rare diseases: from the clinic to research and back” is available here.
The MOOC « From Lab to Clinic: Translational Research for Rare Diseases » is available here.
The MOOC « Health Data Ethics & Regulatory Frameworks in Rare Disease Research » is available here.
The MOOC « Innovative Therapies and Personalised Medicine for Rare Diseases » is available here.

Target  audience:
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

For more information, please contact: Magda Granata

The videos below are part of a series of 8 linked videos (step 1 to step 8) explaining the different steps of a genetic consultation. We are following three patients’ cases illustrating three different situations that can be met in the clinical practice of geneticists when diagnosing rare genetic diseases. These videos have been funded by the European Joint Programme on Rare Diseases (EJP RD). The EJP RD is a program that has received funding from the European Union’s Horizon 2020 research and innovation programme under grant agreement N°825575.