On the 4th of May, E-Rare – ERA-Net for research programmes on rare diseases, organized in collaboration with RD-Connect a workshop allowing researchers to discuss the obstacles for data sharing(…)
RD-Connect has released a new flyer giving an overview on the RD-Connect platform and promote it among researchers.
The RD-Connect annual meeting took place in Berlin on the 1-2 of May. During the two days, the project partners presented the project achievements from the last year.
RD-Connect has released several videos that promote different aspects of RD-Connect work.
An international scientific workshop on the 7-8th April 2017 at the Princess Al Jawhara Center in Manama aimed to discuss the mechanisms of preparing a national and Gulf registry for(…)
As part of the joint RD-Connect, NeurOmics and EURenOmics annual meeting in Berlin (1-5th of May 2017) RD-Connect will provide a number of training opportunities for rare disease researchers. These(…)
The freshly launched RD-Connect Facebook page will complement the RD-Connect Twitter and allow to better engage with patient communities.
Horizon, the EU Research & Innovation Magazine, has published an interview with Prof. Hanns Lochmüller, the coordinator of RD-Connect, entitled Sharing data between researchers too often an afterthought in rare disease(…)
As each year, the last day of February is the Rare Disease Day. To raise awareness about rare diseases and their impact on patients’ lives. The campaign targets the public,(…)
Dr Lucia Monaco, the Chief Scientific Officer at Fondazione Telethon and a member of RD-Connect, has received the EURORDIS Scientific Award 2017 for cutting edge scientific developments.
Rare Diseases Registries Workshop on 21st-22nd March 2017 in Madrid will bring together all the key stakeholders in the development of rare disease registries.
Download Hanns Lochmüller’s talk on overcoming bottlenecks in rare disease research through data sharing infrastructure presented at the conference of the International Rare Diseases Research Consortium (IRDiRC).
A survey prepared by ELIXIR Slovenia within ELIXIR-EXCELERATE aims to collect training capacity and the needs of the Rare Disease Community. The following brief survey was based on the ELIXIR(…)
Registration for the joint RD-Connect, NeurOmics and EURenOmics Annual meeting in Berlin is now open.
As of January 2017 Emma Heslop has left the role of RD-Connect project manager to move onto a new role within the team in Newcastle. Libby Wood is now in(…)