Background: The European Programme on Cooperation of Science and Technology (COST) funds the formation of networking activities. These are especially favorable for research around rare diseases, because experts and scientists maybe at different centres and an international collaboration is needed.
In November of 2013 the COST Action DSDnet was started. Currently 18 different European countries are participating and countries from all continents have voiced an interest for collaboration. The aims are to form a network of scientists for translational research, to bring forward a European Reference Network on DSD connecting national centres of expertise for better care, and to provide information to professionals, stake holders, and the public on the topic.
To reach these aims, DSDnet has build five working groups, which will provide consented information on (a) clinical approaches, (b) genetics and biology, (c) laboratory aspects, (d) perception of research, and (e) dissemination of information. Information will be made available through a public website. An agenda of future research necessities will be compiled and funding bodies approached.
18 Sep 2014 - 20 Sep 2014