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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The 3rd IRDiRC conference Paris

28 November 2016

The 3rd conference of the International Rare Diseases Research Consortium (IRDiRC) will take place on February 8-9, 2017 in Paris,.

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Elixir rare diseases data resources and tools survey

2 November 2016

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 the requirements of the rare disease community.

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Rare disease patients: your chance to get involved in European Reference Networks

6 October 2016

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.

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RD-Connect Panel for Biobank Assessment

30 September 2016

We are pleased to announce the formation of a panel of experts who will consider the biobanks against a set of criteria to ensure the minimum quality assurance is met.

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SMA Awareness Week

27 September 2016

The last week of September in the UK is dedicated to rising awareness of Spinal Muscular Atrophy (SMA), an inherited neuromuscular condition.

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RD-Connect guidelines for informed consent receive the “IRDiRC Recognized Resources” label

20 September 2016

The RD-Connect Guidelines for informed consent were acknowledged by IRDiRC as fundamentally important for the international rare diseases research.

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RD-Connect Newsletter has 1000 subscribers!

13 September 2016

In September 2016, the number of newsletter subscribers reached 1000! We would like to thank our readers for following our updates and being with us all that time.

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World Duchenne Awareness Day

7 September 2016

Contribute to raising awareness and supporting Duchenne patients and families by donating a Duchenne Balloon today.

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