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?
FOR THE PUBLIC
•
Have a better understanding of what rare disease is
•
Break down preconceptions about rare disease
FOR SCIENTISTS
•
A platform for sharing research
•
Increase funding
FOR RESEARCHERS
•
A platform to showcase technologies and developments
•
Increase awareness of clinical trials
FOR CLINICIANS
•
Raise awareness of how healthcare is supporting those with rare diseases
•
Increase dialogue with patients
FOR SUPPORT GROUPS
•
Raise your profile and public engagement
•
Collaborate with other stakeholders
•
Increase funding
FOR BUSINESSES
•
Enhance PR
•
Support philanthropic company objectives
•
Support an umbrella organisation
•
Showcase a product and inclusivity
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.
Fact
80%
…but in fact 80% are genetically derived.
Fact
95%
…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.
