On the 27th of February 2016 the popular Genetics Matters event was held at the International Centre for Life, as part of International Rare Disease Day.
The day involved presentations from leading Newcastle University researchers, as well as talks delivered by patient organisations. Activities also included “meet the scientist” tables; interactive discussions which gave participants a chance to chat about rare diseases and hear about the exciting research at Newcastle University.
The NIHR (Newcastle) BRC were represented as part of the research theme of “genomics”, as well as having representatives from the NIHR BioResource at the event.
Professor Michael Briggs, Director of the Institute for Genetic Medicine opened the event by giving a presentation on ‘Why Genetics Matters”, which was followed by a presentation on “Biology of rare skin tumors”, delivered by Dr Neil Rajan – a Wellcome Intermediate Clinical Fellow and a researcher within the Institute of Genetic Medicine.
Dr Robert McFarland, Wellcome Centre for Mitochondrial Research, Newcastle University then followed with a presentation on “Mitochondrial Genetics”.
To conclude the first part of the session, Professor Susan Lindsay of the HDBR (Human Developmental Biology Resource) at Newcastle University delivered her presentation entitled “Of mice and men”.
Participants then gathered together to take part in the “meet the scientist” sessions until a break half way through the day’s events.
The rest of the day continued with “Patience Voice”; presentations by representatives of patient organisations such as, RP Fighting Blindness and Northern Clindoma Interest Group.
The day was a great success, with fantastic participant feedback;
“I really enjoyed the Genetics Matters afternoon. It was obvious by the way the audience paid attention to the speakers that the presentations were at the right level…easy to understand and informative.
“All in all a master class in how to deliver information to the public, Newcastle University certainly has set the Gold Standard in public participation.”
We would like to thank all the presenters for their wonderful and inspiring talks and demonstrations, and particularly the presenters of the “Patient Voice” session for sharing their experiences with us and for the inspirational and emotional talks that they gave.
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.