On the 28th of February, after our Genetics Matters event, Dr Helen Walker and the Rare Disease NUCoRE team lit up Newcastle iconic buildings (the Civic Centre, the Millennium Bridge and the St Mary’s Lighthouse) in the International Rare Disease Day colours, to raise awareness of rare diseases and support patients living with rare conditions in our communities.
Our annual Genetics Matters Rare Disease Day event was a great success!
We have met with 110 people at the Great North Museum: Hancock on the 28th of February, discussed novel treatments for rare diseases, the need for more equity for rare disease patients, and shared our discoveries and projects to advance rare disease research and improve lives of patients with rare diseases.
We received great feedback, with participants asking to be involved in several research activities, requests for more public lectures, and requests for school visits and work experience placements. Thank you to all the scientists, presenters and participants for attending Genetics matters 2026. We really enjoyed it, and we are looking forward to seeing everyone next year!
Genetics Matters flyers 2015-2026.
Time really flies!
This year marks the 10th edition of our popular Genetics Matters – a Rare Disease Day event. Over the years we have chatted to over 900 people, exhibited work by 20+ genetic and rare disease laboratories, interacted with multiple charities and patient organisations and worked tirelessly to raise awareness of rare diseases and rare disease research in the North East.
We are really looking forward to seeing everyone at the Great North Museum: Hancock this Saturday at 10am. There will be presentations, debates, hands on experiments, microscopes, activities, enthusiastic scientists, free lunch, and some yummy cake.
Event agenda
09:30-10:10 Arrival and tea/coffee
10:10-10:15 Welcome – Kasia Pirog
10:15-10:30 Introduction to the rare disease landscape at Newcastle – John Sayer
10:30-10:50 Jordi Diaz-Manera: Presenting the MyoGuide – a resource to advance diagnosis and research in neuromuscular diseases
10:50-11:10 Sophie Hambleton: What are ‘Advanced Therapies’ and what hope do they offer for people living with a rare disease?
11:10-11:30 Annette Pantall: A patient’s perspective on the importance of genetics and novel therapies
11:30-11:50 Carly Nicklin: Anthony Nolan, a pioneering UK charity that saves the lives of people with blood cancer and blood disorders by managing a stem cell donor register
11:50-12:30 Debate: How do we get more treatments to the people who need them? In the absence of medicines and cures for many conditions, how do we help patients live their best lives? How do we address inequities for people living with a rare disease?
12:30-13:00 Lunch (buffet)
13:00-15:00 Round tables (lab demos, hands on activities, approx. 10-15 min per table)
Registration for our annual #GeneticsMatters Rare Disease Day patient and public information day is now open. Join us for interesting presentations and hands-on demonstrations, meet the scientists, and find out more about rare disease research at Newcastle University and The Newcastle Upon Tyne Hospitals NHS Foundation Trust. The event is FREE to attend and refreshments will be provided. To register, click: https://lnkd.in/eSSbGNSD
We had a great event, with thought-provoking presentations, great discussion and interesting hands on tables and demonstrations.
Thank you to all the presenters, patients and attendees for giving up their Sunday and celebrating the International Rare Disease Day with us!
Together, we can move mountains.
Rare is many,
Rare is strong,
Rare is proud!
To register, please use the QR on the poster below:
The Great Hall at the Discovery Museum was abuzz with science and exciting conversations last Sunday as Newcastle university researchers, rare disease patients and members of the public gathered to celebrate the International Rare Disease Day.
With 104 attendees and 40 enthusiastic scientists, a wonderful panel debate on achievements and challenges in rare disease research, exciting hands on experiments (building a 3D skin model, DNA extraction, osteoarthritis diagnosis, muscle MRI scans, art installations and many more) and lovely food, we had an amazing day!
We’d like to thank all the presenters and attendees for participating in our event. We hope you enjoyed it as much as we did, and we hope to see you next year again!
Some feedback from our participants:
[The event] was great, no need for improvement!
Thank you for hosting such an amazing event!
Loved each and every bit.
Thank you for recommending this, I had a really great time! […] Everyone there was really nice and the activities were so fun
Many thanks to you all for giving your weekend to educate and entertain us.
We’re organising Genetics Matters again! Genetics Matters is a free annual event showcasing rare disease and genetic research at Newcastle, with hands-on experiments, laboratory demonstrations, scientist talks and free refreshments.
We’ll be at the Discovery Museum on the 25th of February, join us at http://tinyurl.com/3f4hwkks
We had 100 people with us yesterday, despite Newcastle United playing at Wembley, raising awareness of rare diseases and rare disease research, chatting about science, performing experiments, and discussing aspects of medical research at Newcastle.
The room was buzzing with interesting conversation, and we have already had a lot of good feedback. Thank you to all the presenters and scientists, patient organisations and patients for participating, and thank you to everyone for coming and spending a Sunday afternoon with us. We really enjoyed the event and we hope that you did too.
See you next year!
Photos by Rachel Richman
Registration is now open for our FREE Genetics Matters event! Go to http://tinyurl.com/4rs83jbr to book, or scan the QR code on the poster. Hands-on research tables, friendly scientists and yummy cake, organised as part of the International Rare Disease Day. Please share!
