RAREfest18 featured on BBC Look East

Dr. Tim Guilliams, CRDN founder and trustee explains why RAREfest is so important, ahead of the launch – 30 Nov 2018

RAREfest brings life sciences to Cambridge

Heartwarming, uplifting and informative, the world’s first-ever festival on rare diseases drew huge crowds to the Guildhall at the weekend”
November 30 & December 1, 2018

Radio Interview: Rare Disease Day 2020

Jo Balfour, Operations Manager speaks to BCC Radio Cambridgeshire about the Rare Disease Day Rare-I-Tea party that CRDN is hosting.
Febuary 2020

Spirit of Stephen Hawking evoked by RAREsummit

Cambridge Rare Disease Network is gearing up for its 4th RAREsummit on September 23rd 2019 at the Wellcome Genome Campus.

CRDN on TV and radio

Rare Disease Day Rare-i-Tea Party 2020

Rare Disease Day Rare-i-Tea Party 2020

The 29th of February marks International Rare Disease Day, a day which aims to increase awareness of the impact of rare diseases on patients. To celebrate the day, local charity the Cambridge Rare Disease Network are hosting a special event to support local families called a Rare-I-Tea Party.

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Kay’s Story

Kay’s Story

This is a story of how a rare disease can affect a family and how it can change their world for ever. It has inspired so many people because it is all about love, about parents never giving up and despite personal tragedy continuing to make a positive difference so others should not have to suffer the same experience.

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CRDN in newspaper articles

RAREfest brings life sciences to the Guildhall

RAREfest brings life sciences to the Guildhall

Heartwarming, uplifting and informative, the world’s first-ever festival on rare diseases drew huge crowds to the Guildhall at the weekend (November 30/December 1). RAREfest was organised by Cambridge Rare Disease Network (CRDN) to “engage, educate and empower” those with rare diseases, their families, researchers, clinicians and support groups.

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CRDN featured in blog articles

Eastern AHSN supports RAREfest in shining a light on innovation

Eastern AHSN supports RAREfest in shining a light on innovation

In supporting RAREfest 2018, the ‘first-of-its-kind’ rare disease-inspired festival in Cambridge, we helped to shine a light on innovations that aim to address the challenges. The Cambridge Rare Disease Network (CRDN) brought together stakeholders in the rare disease community and the region’s public to raise awareness of rare conditions and to showcase innovative solutions.

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Cambridge’s new rare disease festival

Cambridge’s new rare disease festival

The Cambridge Rare Disease Network’s RAREfest, a festival focusing on rare diseases, will bring together researchers, scientists, patients, and the public. It’s taking place on the 30th November and 1st December in Cambridge, England, and Patient Worthy talked to Jo Balfour, who’s involved in organising the event, to find out more about it.

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RAREfest

RAREfest

It’s less than a month now until the very first RAREfest in Cambridge UK! This is a brand new event run by Cambridge Rare Disease Network to try and broaden awareness and discussion around rare conditions, celebrate diversity, showcase research, medicine, science and technology…. and inclusive design!

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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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CRDN Summit 2017

CRDN Summit 2017

On 23rd Oct, Dawn and Allison had the fantastic opportunity to attend the Cambridge Rare Disease Network (CRDN) Summit 2017 at Robinson College, Cambridge.

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CRDN Summit: Rare diseases are rare but rare disease patients are numerous

CRDN Summit: Rare diseases are rare but rare disease patients are numerous

On the 23rd of October, Robinson College of the University of Cambridge hosted the 3rd annual CRDN summit.

The summit brought together patient groups, healthcare professionals, academics, researchers, biotech companies, and the pharmaceutical industry in a spirit of collaboration, innovation and passion to re-imagine and re-invent the Rare Disease patient journey.

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Cambridge Rare Disease Network Conference 2017

Cambridge Rare Disease Network Conference 2017

It’s fair to say, I’ve been a busy boy. Last month it was Canada, next week it’s Belgrade and yesterday it was Cambridge. OK, not quite as far away as the rest, but what an amazing setting for the Cambridge Rare Disease Network conference (CRDN).

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Cambridge International Rare Disease Summit 2016

Cambridge International Rare Disease Summit 2016

The introduction from new chair of CRDN Alistair Kent OBE was followed by a panel of ‘Powerful Voices’ where patient organisations are shown to be integral to making change in rare disease: quote from Ben Howlett MP “patient organisations make massive amounts of change”.

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Collective intelligence at the Cambridge Rare Disease Network

Collective intelligence at the Cambridge Rare Disease Network

At the first annual summit of the Cambridge Rare Disease Network we saw examples of collective intelligence making real impact; new technologies, platforms, and networks supporting decisions, analysis, and discovery; speeding progress on the route towards new treatments and cures.

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CRDN in journals and magazines

PMEA 2019 winners announced

PMEA 2019 winners announced

PMLiVE’s annual PMEAs, now in its 19th year, had its highest number of entries yet, with the largest range of companies entering the competition in almost two decades. This was reflected in the number of attendees at the event, with an impressive 430+ industry professionals present on the night.

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Dan Jeffries – A rarity personified

Dan Jeffries – A rarity personified

Imagine living with one of the world’s rarest medical conditions, to then discover you have another one… with the unexpected melodramas that are worthy to be in a book. As it happens, Dan Jeffries is one such phenomenon. And yes, he’s even published his own memoirs!

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Can you help harness potential knowledge about genetic intellectual disability?

Can you help harness potential knowledge about genetic intellectual disability?

When I was at the Cambridge Rare Disease Network Summit the other week, I saw a very interesting presentation that has something of interest for every family of a child with a genetically-derived intellectual disability. This means everything from autism, Down’s syndrome, Williams syndrome and many, many other conditions from the rare to the much more frequently occurring.

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More interest in Rare Diseases: Cambridge Rare Disease Summit & FDA new draft guidance

More interest in Rare Diseases: Cambridge Rare Disease Summit & FDA new draft guidance

I attended the first Cambridge Rare Disease Network summit, held in Cambridge UK, with a fantastic line-up of speakers from a range of professions to discuss current and new initiatives in rare disease. The debates ranged from the use of next generation sequencing for diagnostics, to crowd-sourcing both for science and funding, to drug repurposing, to the views of payers and the issues around pricing.

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