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Cambridge Rare Disease Network - CamRARE teams up with Findacure to bring a sip of RARE to Pint of Science Festival 1

For the second consecutive year, CamRARE is hosting 2 rare disease themed evenings for the Pint of Science Festival. We’ll be based at the Panton Arms in Cambridge on 21 and 22 May inspiring the general public to be curious about the science and research taking place locally into rare diseases.

We’re excited to have teamed up with local rare disease charity Findacure to bring you a great selection of speakers undertaking research, delivering education programmes and raising awareness about rare disease.

“Effectively communicating science and linking it to the ‘real world’ has important benefits for both scientists and society” POS

Our speakers will explore the potential for rare disease research to help us better understand and treat more common diseases and learn about the plans for rolling out the technology and lessons learned from the 100,000 Genomes Project into the NHS.

Join in our pub quiz to win a POS pint glass and test out your own pain threshold…!

The scientists have paired with local artists who’ve created an artistic interpretation of the science. Artworks will be presented by the artist following each talk and be on display at the Creative Reactions event on 24 & 25 May at St.Barnabas Church, Cambridge 

21 May, Panton Arms, Cambridge – The Genomic Revolution: Finding a Cure for the 1 in 17

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Cambridge Rare Disease Network - CamRARE teams up with Findacure to bring a sip of RARE to Pint of Science Festival 2

Your DNA Your Say!

Dr Anna Middleton (Head of Society and Ethics Research, Wellcome Genome Campus)  ‎@Genomethics 
Big Data and DNA now go hand in hand. This is pivotal for exploring the link between genes and disease. The bigger the datasets the better. Most DNA data is ‘de-identified’, i.e. names and addresses have been removed but it will soon be possible to identify a person from their DNA alone. Would this stop you donating your DNA data for research? What harms can come from this? We explore what public across the world have said and how their views are shaping policy.

Solving the Unsolved

Dr Gemma Chandratillake (Course Director, ICE Genomic Medicine programme; Education and Training Lead, East of England Genomic Medicine Centre; Clinical Genomics Specialist, Cambridge Rare Disease Network Trustee)    @GemmaChand 
On 5 Dec 2018 Health Secretary Matt Hancock announced that the 100,000 Genomes Project had reached its goal of sequencing 100,000 whole genomes uncovering new diagnoses and improved treatments for patients with rare inherited diseases and cancer.
This marks the end of a chapter rather than the end of the story and earlier this year a new target was announced for the NHS to sequence one million genomes over the next 5 years. Will delivering genomic medicine in the NHS enable better outcomes for patients and contribute to a wealth of information to drive the treatments of the future?

22 May, Panton Arms, Cambridge – Researching the Rare to Understand and Treat the Common

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Cambridge Rare Disease Network - CamRARE teams up with Findacure to bring a sip of RARE to Pint of Science Festival 3

Can we turn back the clock on rare premature ageing diseases?

Dr Delphine Larrieu (Group Leader at Cambridge Institute of Medical Research) 
Rare genetic premature ageing syndromes called progeria trigger the appearance of ageing signs in early childhood causing many changes to the body over time, including heart disease, bone changes, hair loss, joint and skin changes, and early death around 14 years old. Unfortunately, there is no current cure and therapies just improve the symptoms. Hear how Delphine’s team is tackling this and suggesting new treatments and how the lab’s work could also open up new perspectives into improving normal age-related pathologies.

Everybody hurts sometimes … or do they?

Dr Mike Nahorski (Cambridge Institute for Medical Research) 
Chronic pain is a debilitating condition that affects 14 million people in England alone. But scientists think the have come a step closer to understanding it – by studying a rare group of people with congenital insensitivity to pain, who feel no pain at all. Cambridge University researchers have identified a faulty gene that seems to switch pain off in some people and it is hoped the discovery could lead to new treatments for those who live with pain every day.

Creative Reactions

Elizabeth Fraser  (Printmaking/graphic design) 
Eri Ikuno (Illustrator) 
Eithne Fisher (Painting/drawing) 
Kate Grant  
(Medicine/resin/acrylic/printmaking) 
As part of the Creative Reactions project, these artists will be presenting their artwork inspired by the research of speakers in this talk series. The artwork will also be on display at our Creative Reactions Exhibition at St Barnabas Church, 24 – 25 May.

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