Category Archives: Musculoskeletal news

Join hands to make the voice of rare diseases heard (Rare Disease Day 2016)!

RDD-1024x365A show of hands from the Institute of Genetic Medicine today, to raise awareness of the international Rare Disease Day and the importance of rare disease research.

The image was shared via Twitter and email with the larger community today.

CcZbfa-WwAAGiOt.jpg large1 in 17 people in the EU is affected by a rare condition. That’s 3.5 million people in the UK alone! Although individually rare, together the rare conditions affect more people than cancer and AIDS combined.

Let’s all unite to make the rare disease voice heard!

Genetics Matters event a success!

On the 27th of February 2016 the IGM held their popular “Genetics Matters” event at the International Centre for Life, as part of the international Rare Disease Day. The day was a huge success and included presentations form the leading Newcastle University scientists and patient organisations as well as meet the scientist tables, giving the participants a chance to chat about rare diseases and hear about the exciting state of the art research at Newcastle University.

We would like to thank all the participants, presenters and patient group representatives for making this event so informative and enjoyable. Together we will make the voice of rare diseases heard!

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For more information and photos from the event please visit: https://blogs.ncl.ac.uk/igmengagement/27th-february-2016-genetics-matters/

27th February 2016 – Genetics Matters!

We are pleased to announce we’ll be hosting our popular Genetics Matters event again on the 27th of February 2016 as part of the International Rare Disease Day. Come meet the scientists, touch real specimens, chat about rare diseases and hear about the exciting state of the art research at Newcastle University.

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“Genetics Matters” annual event serves to showcase genetic research and to give the patient and charity organisations a voice and a platform to interact with the members of general public. The theme of the Rare Disease Day in 2016 is “Patient Voice”, recognising the crucial role that patients play in research by voicing their needs and instigating change.

We would like patients or members of patient families to be present on the day and actively participate, sharing the presenting with our scientists. We believe that the patients’ voice is important in directing the course of scientific research and that it is important to remember that behind the tubes and microscope slides there is also a human story, and that we are all working towards a common goal.

This event is FREE to attend, but we have limited places available, so if you would like to attend, please book your place here:

http://forms.ncl.ac.uk/view.php?id=9395