Online training needs survey for research in rare diseases

Published 27 June 2019

The European Joint Programme on Rare Diseases (EJP RD) is a multifaceted program aimed at supporting Rare Disease (RD) research in every possible way. This includes funding of primary research, networking and training capacities as well as the development and application of tools and methodologies facilitating the generation, analysis, and dissemination of data all the way from genetic/translational research to clinical trials.

EJP RD is coordinating a Work Package that aims to develop a streamlined academic course on RD research that will be multidisciplinary and fully available online.

To better address the course development and avoid any duplication, we would like to explore the needs of a huge group of learners (academic or medical students, young researchers, patients’ organisations, …) and list all existing online training initiatives or projects already developed.

EJP RD has designed an online survey aimed at collecting feedbacks from academic researchers, academic or medical PhD students/post doc, patients’ organisations, and more.

EJP RD consortium is kindly inviting those working in the field of rare disease to complete the survey at the following link:

The completion of the survey won’t take more than 5 to 10 minutes.