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 “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 Autumn 2023 and Q1 2023.
Stay tuned for updated information.
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
Online available training resources
As part of EJP RD WP16 activities, a benchmarking of existing online training resources in the rare diseases research area was performed in 2019. This collection of existing and available courses has been compiled using the Tess ELIXIR repository platform. It now contains more than 30 resources. A regular monitoring is being carried out in order to update this list of training resources on a regular basis. Only currently or regularly available and freely accessible resources are included. If you notice that some useful training resources are missing, please kindly contact us, we would be happy to complete this list of training resources. Find below the current list of mapped resources.
Name | Description |
---|---|
Eurordis Open Academy | The EURORDIS Open Academy currently encompasses the Winter School on Scientific Innovation and Translational Research, the Summer School on Medicines Research and Development, the Leadership School and the Digital School |
Educational webinars on rare endocrine conditions (ENDO-ERN) | Various webinar on rare endocrine conditions |
Educational webinars on rare and complex epilepsies (EpiCARE ERN) | Free online seminars on Thursdays related to rare epilepsies |
Postgraduate Curriculum in Rare Kidney Diseases developed by ERKNet | ERKNet Postgraduate Curriculum in Rare Kidney Diseases / ESPN – IPNA Curriculum in Pediatric Nephrology |
Webinars from the European Reference Network in Rare Hematological Diseases (EuroBloodNet) | The aim of these educational activities is to promote the interest on very innovative topics in order to stress among health professionals the cutting-edge advances in the field of Rare Hematological Diseases. One or 2 webinars per month, each of them lasting 45 minutes. |
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.