News
Medics 4 Rare Diseases Red Flag Survey
Medics4RareDiseases are excited to announce the launch of their new research project: The M4RD Red Flags Survey. The purpose of the survey is to find out what different rare diseases have in common during the time before diagnosis, a period often called ‘the...
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...
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...
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...
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...
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...
Rare Disease Day 2018 Addenbrooke’s Concourse
Kay and Jo at Addenbrookes concourse meeting the staff and publicSome of the CRDN team headed to Addenbrookes to celebrate Rare Disease Day 2018 by meeting patients, visitors and staff with other rare disease advocates at the concourse. CRDN's Kay Parkinson and Jo...
CRDN trustee helps new mums learn genomics from home
Dr Gemma Chandratillake, CRDN trustee and East of England Genomics Education Lead, attended the No Isolation AV1 avatar breakout workshop at the CRDN Summit 2017 in October. Like others attending she quickly began to see applications for the robot beyond its original...
Patient Centred Focus at Genomics Festival 30-31 Jan 2018 – Front Line Genomics
In January 2018 CRDN visited the 2-day GenomicsFest at ExCel in London hosted by Front Line Genomics. We heard inspiring talks and made great connections for the future. It was exciting to see Rare Disease charities and individuals taking to the stage to share the...
CRDN Summit 2017 – The Film
We collaborated with Lucia Tambini, film maker producing films for charities including Oxfam, Tourettes Action, SeeAbility and Walk the Walk, to capture the essence of our annual summit in 2017 and what it is about our city of Cambridge which offers great...
DNA Digest – reflecting on the CRDN Summit 2017
Rare diseases are rare but rare disease patients are numerous. DNA Digest said "One of the most impressive parts of the program was patients presenting their posters. Each person was suggested to share three wishes with the audience, regarding the future care of...
Ring20 Research and Support UK share their take home messages and collaborations from #CRDN2017 Summit
Allison Watson of Ring20 Research and Support Uk attended #CRDN2017 summit with her Patient Journey Poster. "A great innovation of the conference and real highlight for us was the patient journey poster competition. Prior to the conference, we were 1 of 33 different...
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