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Cambridge Rare Disease Network - RAREfest18 1

Nov 30 & Dec 1 2018  • THE GUILDHALL, CAMBRIDGE • 

Why RAREfest?
And why a public event?

It’s 2018 and rare diseases are still not being consistently diagnosed, treated and supported effectively.  Free to attend,  this 2-day festival will shine a light on some successes and innovative solutions that are striving to address this.  RAREfest will raise awareness of rare conditions and bring together all stakeholders in  the rare disease community alongside the general public from across Cambridgeshire and beyond.

WHAT IS A RARE DISEASE?

In the EU, a disease is classed as ‘rare’ when less than 1 in 2000 people  suffer from it. There are between 6,000 – 8,000 discovered rare diseases, including more well known diseases such as Motor Neurone disease, Cystic Fibrosis, and Huntingdon’s Disease. Around 80% of rare diseases are genetically derived.

#RAREfest18.
What’s in it for you? 

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FOR THE PUBLIC

Have a better understanding of what rare disease is

Break down preconceptions about rare disease

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FOR SCIENTISTS

A platform for sharing research

Increase funding

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FOR RESEARCHERS

A platform to showcase technologies and developments

Increase awareness of clinical trials

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FOR CLINICIANS

Raise awareness of how healthcare is supporting those with rare diseases

Increase dialogue with patients

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FOR SUPPORT GROUPS

Raise your profile and public engagement

Collaborate with other stakeholders

Increase funding

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FOR BUSINESSES

Enhance PR

Support philanthropic company objectives

Support an umbrella organisation

Showcase a product and inclusivity

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FOR US

Raise vital funds

Support our vision and mission

Raise our profile

Showcase the Rare Disease Nurse Network and our charity activities

Facts versus awareness

In 2016 a OnePoll study by Charlotte Chivers found that…

59% of UK adults believe that there are even less than 1 in 2,000 sufferers for a disease to be classed as rare, with 1 in 5 people believing that a disease isn’t rare until it’s only seen in 1 in 100,000 people.

Two-thirds of UK adults aren’t aware of how many people are affected by rare diseases.

Only 2% of the general population are aware of how many Rare Diseases have been discovered, with an average estimate of 2,149 – a fraction of the true number of 6,000 – 8,000.

Even for the more common rare conditions, knowledge is lacking. 1 in 20 UK adults hadn’t heard of any of the rare diseases on a list of 30 more common rare conditions.

Awareness

44%

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OnePoll respondents estimated that 44% of rare diseases are genetic…

Fact

80%

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…but in fact 80% are genetically derived.

Awareness

38%

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OnePoll respondents thought only 38% have no treatment…

Fact

95%

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…but in fact 95% of rare diseases have no approved drug treatments.

Fact

%

3 in 4 rare diseases affect children.

Awareness

%

...whereas the general public believe that just 40% do.

Fact

%

1 in 10 UK adults are aware that 30% of children with rare diseases won’t survive past their fifth birthday.

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Charities, reserachers and organisations submtted filsm to be UpVoted for #RAREfest18. The 15 top voted films were shown at RAREfest and all submitted films are now available to view. 

find out more here

If we all got involved, imagine the difference we could make? Don’t just follow us, interact with us and join our thriving rare disease community! There’s lots of ways right here to begin your journey with us…

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