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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The mechanism of Spinal Muscular Atrophy found 20 years after the discovery of the causative gene

6 September 2016

Identifying the cellular mechanism can be a breakthrough in the therapy for SMA. Employing genetic modifiers might revolutionise the treatment and give hope for better quality of life for the patients.

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Next Cross-Project Annual Meeting in Berlin, 1st – 5th May 2017

16 July 2016

The next RD-Connect Annual Meeting will take place in Berlin from the 1st till the 3rd of May 2017 and will be held back-to-back with the joint NeurOmics and EURenOmics final meeting, scheduled for the 4th and 5th of May.

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RD-Connect has 1000 followers on Twitter

30 June 2016

Twitter helps us disseminate the news about RD-Connect’s achievements as well as other relevant information. We thank all of those who by retweeting help us reach broader audience.

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Statement from the Newcastle coordination office on the outcome of the British EU referendum

24 June 2016

The outcome of the British EU referendum will not affect RD-Connect in the near future. We will continue our work to support rare disease research.

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