Edition of 20 December 2019

A Joint Transnational Call has been announced by the European Joint Programme on Rare Diseases (EJP RD) on the topic "Pre-Clinical Research to Develop Effective Therapies for Rare Diseases'. The aim of the call is to enable scientists in different countries to build an effective collaboration on a common interdisciplinary research project based on complementarities and sharing of expertise, with a clear future benefit for patients. A two-stage submission procedure for the joint applications is foreseen with the call to formally open on 13 December 2019.The ERA-Net E-Rare has successfully implemented ten Joint Transnational Calls for rare disease research projects since 2006. This effort continues in the framework of EJP RD that has been established to further help in coordinating the research efforts of European, Associated and non-European countries in the field of rare diseases and implement the objectives of the International Rare Disease Research Consortium (IRDiRC). More information on the call can be found below.

An internal call has also been issued by EJP-RD for demonstration projects concerning the validation of novel methodologies in clinical trials concerning rare diseases. Necessary for a successful demonstration project is the collection of sufficient data from a rare disease clinical trial and related information to enable demonstration of the practicability, performance and opportunities of the innovative methodologies applied to these already acquired data. Trials are often performed with standard classical methodologies not specific for rare diseases resulting in a loss of power to show positive effects.The aim of this demonstration call is not to reanalyse or question the original analysis of data from randomized controlled clinical trials, where efficacy was established, but rather to re-evaluate data that lacked efficiency because it was analysed with classical statistical methodology, which might be not feasible for trials in the rare disease context. The call will officially open on 1 February 2020 and will be conducted in two stages. More information on the call can be found below.

The aim of the EJP RD Networking Support Scheme (NSS) is to encourage sharing of knowledge on rare diseases and rare cancers of health care professionals, researchers and patients. The NSS also aims to enable or increase the participation of usually underrepresented countries in Europe in new and in existing research networks on rare disease(s) or rare cancer(s). The NSS is providing financial support to applicants for fostering organisation of workshops or conferences for new research networks or existing/expanding research networks to strengthen collaborations and to enable exchange of knowledge. The scheme is also focusing on workshops or conferences with research results and innovative solutions as well as to strengthening the collaborations between different stakeholders. There is no limit to the number of participants, however the maximum budget that can be requested is € 30,000 for a networking event.