Save the date, our popular event is back on the 29th of February for one fun afternoon filled with science and cake.
This year we are meeting at the wonderful Great Hall at the Discovery Museum in Newcastle and will be talking about cancer gene therapy, male infertility, the 100,000 genomes project, mitochondrial donations, CRISPR/Cas9 gene editing, drug repurposing and many more hot medical research topics which may have caught your eye in the news. The event is FREE but please book to secure a place by clicking here: https://forms.ncl.ac.uk/view.php?id=6972326
Please spread the news amongst your friends and colleagues, the more the merrier!
Save the date and come see us on Saturday the 29th of February for a fun afternoon filled with science and cake, as part of the International Rare Disease Day. Please email katarzyna.pirog@ncl.ac.uk if you’d like to take part and present and please spread the news amongst your friends and colleagues, the more the merrier!
From the International Rare Disease Day website:
“When the challenge of raising awareness for people affected by a rare disease still looms. On Rare Disease Day we must re-double our efforts. Re-think, re-envision, reimagine. Reframe what it means to be ‘rare’. In fact – rare isn’t scarce, rare isn’t infrequent, rare isn’t remote. Rare is not as rare as you think. The statistics speak for themselves. There are more than 300 million patients, each supported by family, friends and a team of carers, that make up the rare disease community worldwide. Over 6,000 different diseases. Collectively, they make up the third largest country in the world. Rare is many. Rare is strong. Rare is proud. The likely truth is that you know one of the 1 in 20 people affected by a rare disease. We need society to understand that millions of people living with a rare disease around the world face inequitable access to diagnosis, treatment and care. It’s time to take action for people living with a rare disease to have equal opportunities to realise their potential. [..] We need everyone to get involved and join the movement to reframe rare!”
In July, the Minister for rare disease at the Department for Health and Social Care, Baroness Blackwood, announced a ‘national conversation’ on rare disease. This conversation aims to gather a range of views from the rare disease community. The views collected from patients, families and carers, healthcare professionals (including GPs, specialist rare disease clinicians, clinical academics) and industry will be used by government to inform a rare disease framework to improve the lives of people living with rare diseases. This will follow on from the current UK Rare Diseases Strategy which expires at the end of 2020.
To start the conversation, a survey has been launched to understand the major barriers that healthcare professionals working with rare diseases face. Make sure your voice is heard by completing this short survey by Friday 29th November 2019.
An exciting programme of science focused talks in 6 city locations, all in relaxed atmosphere and with refreshments on hand! Come meet Newcastle scientists and see what is being studied in our beautiful city.
The International Rare Disease Day this year is highlighting the power of people coming together, the importance of social care and of kinship when faced with rare disease diagnosis. In the last week of our Black Box cinema we’re exploring the power of kinship.
What connects us? How do we relate to the world around us? Is kinship more than family?
11th of February was the International Women and Girls in Science Day. We’ve organsied a free event at the Lit and Phil in Newcastle to celebrate women in film and in science. Come along to a free screening of Art from the Northumbria Uni’s CNoS fine art research group, followed by a discussion between the artists, Dr Ana Topf and Dr Kasia Piróg hosted by Prof Chirstine Borland. Details below:
The 5th edition of our flagship Genetics Matters event took place in our Institute on the 23rd of February. The event was very well attended, the presentations sparked lively and interesting discussions and we had a special reel showing in our Black Box.
Thank you all for coming on a sunny Saturday afternoon (and a match day!) to celebrate genetic research in Newcastle and to raise awareness of rare disease and the need for rare disease research.
Thank you very much for the wonderful afternoon, it helped me a lot with deciding academic science and researches’ role in the practice of Medicine – participant
The format was very good and the cakes very moreish!! The Pop Up cinema was an excellent idea. – participant
The 2 talks I heard [..] were both absolutely outstanding and interesting for me to hear as a researcher and clinician. – presenter
Does identity begin with the body? What role does science play in understanding who we are? It’s IDENTITY week in our BlackBox pop-up cinema, with films about relationships between mind, body and society in exploring who we are.
Limbs that grow back. Bacteria that eat plastic. Robot pills. Ceramics in our bones. It’s LIFE week (11-15th February) in our pop-up Black Box cinema and we explore how life emerges from raw materials and how artists and scientists work with life as a material
