We had a very enjoyable first meeting. Thank you very much to everyone for volunteering their time to work with us, it was great to meet you and we are looking forward to working with you over the next 3 years, developing outreach and educational materials and sharing our research journey.
If you are interested in participating but couldn’t attend today, the recording of the meeting is available to watch and you are more than welcome to joi us at our next session in June. If you’d like to watch the video or join the Working Group, please email firstname.lastname@example.org
We are looking for members of the public who would like to be involved in a Working Group, and take part in lab meetings, provide a fresh perspective on the work performed in the laboratory, have an active voice in the decisions we take as to the direction of our research and help us deliver their teaching and public engagement activities related to musculoskeletal health and ageing that stem from our work.
Our guest list is growing and we now have an exciting programme to share with you:
We can’t wait!
Celebrating rare disease research, the strength and courage of the rare disease community and patient involvement in science, and talking about genetic research in Newcastle and the importance of raising awareness of rare diseases and the patient journey, it is promising to be a great event.
If you haven’t booked your free place yet, please do so using the links below:
T-12 to Genetics Matters, our annual event where you can find out about rare disease and genetic research in Newcastle, show your support for rare disease patients, perform simple fun experiments and chat to Newcastle scientists over tea and cake.
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 email@example.com 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.