Blog Posts
Pharmphorum magazine writes about #RAREfest18 and the inspiration behind it
This year, patients, clinicians, scientists and researchers will gather in Cambridge for a unique event: RAREfest18, a festival that aims to bring people together to improve the lives of those living with rare diseases.September 20, 2018 - article in...
Raising awareness about rare diseases
A family tragedy has prompted Kay Parkinson, founder of the rare disease charity Alstrom Syndrome UK, to create a conference encouraging joined-up thinking to help improve treatments, care and services for people with rare diseases. pharmaphorum spoke to her ahead of RAREfest18 to find out more.
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...
Healx raise funding to repurpose drugs for rare diseases
Congratulations to Cambridge start-up, Healx, co-founded by founder and trustee of CRDN, as it raises $10m to help repurpose drugs for rare diseases. Forbes and the Telegraph today report that the co-founders of Healx, Tim Guilliams - founder and trustee of...
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...
People’s Health Trust grant makes a world of difference to our Unique Feet group
In autumn 2017 we were delighted to be funded by a People's Health Trust grant using money raised by Health Commit through the Health Lottery to help grow and develop our Unique Feet children's activity group. People’s Health Trust is an independent charity...
Pint of Science Festival welcomes rare disease!
CRDN hosts a rare disease themed pub for the annual international pint of science festival... Pint of Science is 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...
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