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(…)
In 2016, RD-Connect has organized seven highly specialised hackathons focusing on developments of the RD-Connect platform for data exchange and analysis.
RD-Connect, the global research and infrastructure resource for rare diseases, has just passed its four-year mark, and significant progress has been made during the past year.
As Christmas and the New Year are upon us, RD-Connect would like to wish all the partners and newsletter readers a happy and joyful Christmas break.
On 15th December the Board of Member States of ERNs voted to approve all 23 ERN proposals submitted under the first wave (the 24th proposal, submitted under the 2nd call,(…)
The NGO Committee for Rare Diseases is a UN’s global, multi-stakeholder initiative focusing on rare diseases. This is a major step to address the rare disease challenges on a global(…)
The 3rd conference of the International Rare Diseases Research Consortium (IRDiRC) will take place on February 8-9, 2017 in Paris,.
Elixir Excelerate addresses the infrastructure needs of the rare disease community. Take part in the survey to help prioritize the most important bioinformatics tools and better adapt ELIXIR services to(…)
All patient organisations are encouraged to join the European Patient Advocacy Groups to ensure that the patient voice is heard in the European Reference Networks.