Rare Diseases Registries Workshop in Madrid

13 February 2017

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.

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RD-Connect presentation at the IRDiRC 2017 conference in Paris

10 February 2017

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).

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ELIXIR-EXCELERATE Rare Diseases Training Capacity & Needs Survey

8 February 2017

A survey prepared by ELIXIR Slovenia within ELIXIR …

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Registration for the Berlin joint project meeting is open!

2 February 2017

Registration for the joint RD-Connect, NeurOmics and EURenOmics Annual meeting in Berlin is now open.

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New RD-Connect Project manager

26 January 2017

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 post as Emma’s replacement.

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Update on the RD-Connect hackathons in 2016

19 January 2017

In 2016, RD-Connect has organized seven highly specialised hackathons focusing on developments of the RD-Connect platform for data exchange and analysis.

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RD-Connect four years on

3 January 2017

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.

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Best Christmas wishes from RD-Connect!

22 December 2016

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.

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European Commission approves 23 European Reference Networks

17 December 2016

On 15th December the Board of Member States of ERN …

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United Nations inaugurate the NGO Committee for Rare Diseases.

4 December 2016

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 scale.

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