Report of 2nd E-Rare Strategic Workshop, 2019

The 2^ndE-Rare Strategic Workshop was organised on September 20, 2019 in Gdańsk (Poland) to identify topics in the area of Social and Human Sciences (SHS) research that may be suitable for the Joint Transnational Call 2021 in the European Joint Programme on Rare Diseases (EJP RD). This E-Rare Strategic Workshop was part of a week of activities on rare disease research organised by the EJP RD and E-Rare in collaboration with the Medical University Gdańsk.

The first session in the E-Rare Workshop was dedicated to the current state of the art of the contribution of SHS to interdisciplinary research for people affected with rare diseases or rare cancers. The focus of the second session was to discuss what type of transnational research is needed from the perspective of different stakeholders to improve health care implementation and everyday life of people affected with a rare disease. In the last session, the successes, and bottlenecks for transnational SHS research in the field of a specific multisystem rare disorder were presented. The details of these sessions and the conclusions are presented in the following report.