RD-Connect workshop in Bahrain

26 April 2017

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 rare diseases and a Gulf plan to deal with rare diseases using international expertise

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Don’t miss out on training opportunities for scientists at the annual meeting in Berlin!

22 March 2017

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 sessions will take place on Wednesday 3rd May and are open to all.

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RD-Connect is on Facebook!

3 March 2017

The freshly launched RD-Connect Facebook page will complement the RD-Connect Twitter and allow to better engage with patient communities.

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Rare Disease Day

28 February 2017

As each year, the last day of February is the Rare …

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Lucia Monaco receives the EURORDIS Award

22 February 2017

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.

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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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