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Raising awareness about rare diseases

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.

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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...

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Healx raise funding to repurpose drugs for rare diseases

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...

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Medics 4 Rare Diseases Red Flag Survey

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...

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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...

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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 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...

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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...

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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...

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