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Screenprinting for RAREfest & Unique Feet

Screenprinting for RAREfest & Unique Feet

The RAREfest logo comes to life…

Our Graphic Designer has been to summer school, learning to screenprint at Cottenham Village college under the tuition of Ricki Outis – local textile and community artist.

The set up was not commercial so everything was done in a way that was possible to set up at home in a garage, or on a kitchen table, and where all masks and templates are made with paper.

The RAREfest logo offered the perfect opportunity to try out the process of printing with multiple colours and needing to get the registration of all 4 colours as close to each other as possible.

So she cut out four masks, one for each colour, mixed in ink to match the RAREfest colours and away she went – hoping that the logos would work well enough to be useful.

We’re really pleased with the results and are excited to see what she makes for our Unique Feet group…

Screen after the first mask has been removed 
First colour done, 3 to go 
Second and third colours having been added 
9 RAREfest logos ready to be used

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© Cambridge Rare Disease Network 2018
Website designed and built by Suzanne Morris using WordPress
Reg'd Charity Number: 1166365
Company Number: 9798317
Reg'd Office: 19 Sedley Taylor Rd, Cambridge, CB2 8PW
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Findacure Cambridge Rare Disease Showcase

Findacure Cambridge Rare Disease Showcase

Findacure’s Annual Cambridge rare disease Showcase is back on 16th August.

Findacure are also looking for daring individuals to take on their infamous five-minute lightning talk challenge. If you have an exciting project to announce, a personal rare disease experience, or a unique approach to rare disease research, why not share it at their event? Calls for lightning talks are open until Friday 27th July and can be submitted during registration.

Tickets are available now by visiting www.findacure.org.uk/cambridge-showcase and attendance is free to patients, patient groups and charities.

© Cambridge Rare Disease Network 2018
Website designed and built by Suzanne Morris using WordPress
Reg'd Charity Number: 1166365
Company Number: 9798317
Reg'd Office: 19 Sedley Taylor Rd, Cambridge, CB2 8PW
To contact us please send an email
Our privacy & cookie policy
CRDN takes part in the Wellcome Genome Campus Hackathon #BioHack

CRDN takes part in the Wellcome Genome Campus Hackathon #BioHack

Some of the CRDN team joined 150 participants at the Wellcome genome campus BioData Hackathon on 2-3 July

Focused on finding novel ways to use biological data to improve healthcare, teams had 2 days to design, develop and present their solutions. CRDN played a pivotal role in setting the scene for the 2-days as trustee Dr Gemma Chandratillake took to the stage to deliver a presentation reminding participants about the utility of a diagnosis for those undiagnosed and living with rare conditions and the value of patient-centred, cross-sector working with an open approach to sharing research and data.

Dr Gemma Chandratillake,  CRDN trustee, inspires the attendees with her patient-centric talk

The 150 participants with backgrounds in statistics, bioinformatics, genomics, medicine, design, entrepreneurship and patient advocacy listened to pitches from each of the challenge partners before making their way into teams with others interested in a particular challenge.

Jo, our events and communications manager, mentored a team working on a Microsoft challenge. The challenge was to create a system for a clinical trial for phase 3 oncology patients around the person’s home. The 4 teams working on this challenge all brought a variety of skills and creativity to the task and  very much reflected on the patient at the centre of the challenge.  The winning team designed an all inclusive box which allowed video calls with healthcare professionals,  had an integral digital pill dispenser and a section to collect require samples for collection.

And the winners were…

Simon Hazelwood-Smith was one of the winning team in the drug-repurposing challenge set by Open Targets. You can read his blog post here about how their idea was inspired by Gemma’s talk.

 
Twitter image from the #BioHack challenges from the Wellcome Genome Campus website.
© Cambridge Rare Disease Network 2018
Website designed and built by Suzanne Morris using WordPress
Reg'd Charity Number: 1166365
Company Number: 9798317
Reg'd Office: 19 Sedley Taylor Rd, Cambridge, CB2 8PW
To contact us please send an email
Our privacy & cookie policy
Pint of Science Festival welcomes rare disease!

Pint of Science Festival welcomes rare disease!

CRDN hosts a rare disease themed pub for the annual international pint of science festival...

Pint of Scienceis a non-profit organisation that brings some of the most brilliant scientists to your local pub to discuss their latest research and findings with you.

In 2012 Dr Michael Motskin and Dr Praveen Paul were two research scientists at Imperial College London. They began by organising an event called ‘Meet the Researchers’. It brought people affected by Parkinson’s, Alzheimer’s, motor neurone disease and multiple sclerosis into their labs to show them the kind of research they do. It was inspirational for all involved.

They thought “if people want to come into labs to meet scientists, why not bring the scientists out to the people?” And so Pint of Science was born.

In May 2013 they held the first 3-day festival in Cambridge, London and Oxford.

Our events manager, Jo Balfour, co-hosted the Cambridge Neuroscience pub that first year in collaboration with Dr Hannah Critchlow, author of Ladybird Expert Series book, Consciousness.

Pint of Science quickly took off around the world and now happens in nearly 300 cities covering all manner of scientific topics.

We were delighted to be given the opportunity to host a rare disease themed pub in Cambridge during the festival!

The chance to host a  pub, at an international  festival with 19,500 twitter & 21,000 facebook followers, helped us put rare firmly on the menu

We hosted two evenings at Cambridge’s trendy drinking hole, Thirsty.  Both nights were sold out and we packed into their back room to hear about exciting research into rare disease taking place on our doorstep and personal stories of living with rare disease. Our speakers ranged from well know Cambridge rare disease expert Dr Lucy Raymond to emerging shining light, PhD student Patrick Short.  A huge thank you to all of their speakers for their fascinating talks, their personal stories and for getting involved in the fun.

For the full line up, speaker bios and talk synopses click on the links below.

Treasure Your Exceptions

Rare Disease: The Genomic Revolution, Searching for Cure for the 1 in 17

© Cambridge Rare Disease Network 2018
Website designed and built by Suzanne Morris using WordPress
Reg'd Charity Number: 1166365
Company Number: 9798317
Reg'd Office: 19 Sedley Taylor Rd, Cambridge, CB2 8PW
To contact us please send an email
Our privacy & cookie policy
Wellcome Genome Campus Lecture and Tour

Wellcome Genome Campus Lecture and Tour

Summit Patient Journey poster creators and Unique Feet parents on tour at the Wellcome genome campus. 

As part of our #CRDN2017 summit, 33 rare disease patient groups and individuals created posters for exhibition and inclusion in a Patient Journey poster book. As a thank you and an opportunity to meet others and to continue to learn, the Cambridgeshire based  Wellcome Genome Campus Engagement Team treated them and some of our Unique Feet group parents to a fascinating presentation, a guided tour and delicious lunch.

Dr Steve Scott from the Public Engagement Team delivered an interesting introductory talk about the history of and the pioneering work being undertaken at the Wellcome Genome Campus.
It was interesting to hear how they were re-looking at those not diagnosed the first time round and getting more results Sue

Pitthopkins UK

Being a lay person I found the content easy to follow and definitely learned new information.  Angela

Action Duchenne

Amazing! Really interesting and wish we had more time. It would be great for them to give us more understanding – why do genes go wrong?  Sue

Unique Feet parent

What lessons were learnt from the DDD project?

Exome sequencing is cost effective for diagnosis now
Sequencing parents enables rapid, accurate interpretation
Sharing data across centres:
increases the accuracy of diagnosis
increases discovery of new genes
model for translational research in other disease areas
Informatics underpinning is essential
Up front capture of clinical information is critical
Expert-curated knowledge underpins clinical interpretation
Regular re-interpretation of undiagnosed patients
Barriers to translation into existing NHS genetics services

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© Cambridge Rare Disease Network 2018
Website designed and built by Suzanne Morris using WordPress
Reg'd Charity Number: 1166365
Company Number: 9798317
Reg'd Office: 19 Sedley Taylor Rd, Cambridge, CB2 8PW
To contact us please send an email
Our privacy & cookie policy
Rare Disease Day 2018 – CRDN/NIHR lecture event

Rare Disease Day 2018 – CRDN/NIHR lecture event

CRDN and NIHR Cambridge Bioresource team collaborate to host a Cambridge rare disease day lecture event #ShowYourRare

Rare Disease Day takes place on the last day of February each year. The purpose is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on the lives of those affected.

Since its launch by EURORDIS and its Council of National Alliances in 2008, thousands of events have taken place throughout the world reaching hundreds of thousands of people and resulting in a substantial of media coverage. 

Following on from 2017, the theme for RDD is once again research. There has been great progress in rare disease research, often driven by effective collaborations between companies, researchers and patient advocacy groups.  Click here to find out more about the vital role patients play in the research process.

Together, CRDN and the Cambridge NIHR Bioresource team created a programme of short talks to showcase some of the ground-breaking research  being undertaken in Cambridge into a range of rare conditions.

 

The theme of rare disease day 2018 is research. The best research translates findings into meaningful health outcomes and  involves patients at all stages

#showyourrare                   #whywedoresearch

 

Snow didn’t stop play…

Despite the snow and chilly temperatures calling for a cosy evening in on the sofa, the rare disease community came out in force to celebrate Rare Disease Day 2018 at the Uni of Cambridge School of Clinical Medicine, William Harvey Lecture theatre.  Dr. Mike More, Chair of Cambridge University Hospitals, opened the evening for an exciting mix of attendees: those living with rare disease and their family members; young health professionals and students; clinicians; company and charity representatives working in related fields and the curious. Those gathered were treated to excellent presentations about current research from a wide range of speakers based on the Cambridge Biomedical campus and in the city. See the agenda opposite for info on speakers and their talks.

We used Glisser technology at the event to encourage the audience to get involved and engage with speakers by posing questions, responding to polls and sharing slides via social media. For the speaker responses to delegate questions please see here 

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© Cambridge Rare Disease Network 2018
Website designed and built by Suzanne Morris using WordPress
Reg'd Charity Number: 1166365
Company Number: 9798317
Reg'd Office: 19 Sedley Taylor Rd, Cambridge, CB2 8PW
To contact us please send an email
Our privacy & cookie policy