RAREfest 2018

RAREfest 2018 – the Cambridge Rare Disease Network’s newest offering…….more news and updates coming soon.

Nov 30 and Dec 1 2018 – The Guildhall, Cambridge – SAVE THE DATE!

It is 2018 and Rare Diseases are still not being diagnosed and supported effectively……

Cambridge RAREfest is a public, free, 2-day festival raising awareness of Rare Disease, bringing together the general public, scientists, academics, clinicians, patient groups, businesses, patients and families from across Cambridgeshire and beyond to raise the profile of Rare Disease. 

What’s it all about?

Throughout Saturday 1 Dec, the Guildhall, a central and historic Cambridge location will host up to 1000 visitors of all ages who will have opportunities to take part in experiments, see live demonstrations, try out new assistive technologies, be inspired by incredible athletes and performers, watch Rare Disease inspired films and ENGAGE with experts and patients through a programme of short talks and Q+A. Our RARE -i-Tea bar will provide refreshments and space to chill out and enjoy the library of resources on offer.

On the evening 30 Nov the Guildhall will host an audience of up to 500 to be indulged in outstanding public lectures interspersed with rare stories and talent expressed through performances from the arts.The audience will have a preview of the RareSolutions and RareArt exhibitions submitted from schools through our school’s outreach programme, which will take place in the autumn term 2018.

Why RAREfest? And why a public event?

Well, in 2016 a One Poll study by Charlotte Chivers found that:

Two-thirds of UK adults aren’t aware of how many people are affected by Rare Diseases

59% of UK adults believe that there are even less than 1 in 2000 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

Only 2% of the general population are aware of how many Rare Diseases have been discovered, with an average estimate of 2149 – a fraction of the true number of 6000 – 8000

Respondents estimated that 44% of Rare Diseases are genetic, when the true figure is 80%

What do we hope RAREfest will achieve?

 We hope it will help EDUCATE, ENGAGE and EMPOWER the public by:

  • Informing:  1 in 17 people are affected by a Rare Disease – most will receive 4-5 mis-diagnosis before being diagnosed
  • Providing knowledge and understanding of what constitutes Rare Disease, it’s extent and the genetic basis of 80% of Rare Diseases
  • Providing knowledge and understanding of science, research and technology that is impacting on the daily lives of those living with Rare Disease, what’s helping now and what the future holds
  • Raising awareness of the networks and organisations who support those living with Rare Disease
  • Inspiring school children to be curious, ask questions and learn about genomics and rare disease,  to consider the impact it has on people’s lives and be thoughtful about solutions to everyday barriers to independence

It will help EDUCATE, ENGAGE and EMPOWER scientists, researchers, clinicians and businesses :

  • To better understand experiences, questions, concerns and viewpoints of patients and the public and use this to guide, influence and improve future research and strategy, and ultimately improve patient care
  • To  build a positive public image
  • To improve their communication skills and increase flexibility in presenting style
  • By creating dialogue between stakeholders groups, patients and the public which will address major issues such as 95% of Rare Diseases having no treatment or cure, the diagnostic odyssey, lack of knowledge and understanding.
  • Generating collaborations that will work for the benefit of the patient

It will help EMPOWER charities and organisations who support those living with rare disease to:

  • Raise awareness and the profile of their work
  • Engage the public in their cause
  • To EMPOWER the public and patients be more aware of and more able to access healthcare research and innovation
  • Provide a platform for collaboration with other stakeholders that will work for the benefit of the patient
  • Better understand the gaps in the public’s understanding and knowledge to be able to address this

And for CRDN we hope to:

  • Raise public awareness and increase public engagement
  • Bridge the gaps between the work of ourselves, other stakeholder groups and society so that research and innovation are enhanced and valued by people, whether we are directly involved with them or not
  • Provide a platform to build an effective network in Cambridge and unlock its potential for Rare Disease awareness and scientific progress
  • Encourage and EMPOWER social entrepreneurs to develop and test new ideas.
  • Value and celebrate those living with Rare Disease
  • Demonstrate examples where barriers to leading valuable and independent lives are overcome

 From summit to RAREfest

Since 2015 we have held an annual Rare Disease summit, each year increasing our numbers of attendees, our range of groups represented and our reach beyond Cambridge and the UK into Europe and the US. In 2016 our summit was a finalist in the Communique Awards for Best Stand-Alone event for excellence in healthcare communications. At our 2017 summit we gave patient groups a unique opportunity to create patient journey posters, collated as a book, and from this have learnt the power of their voice in communicating awareness and knowledge. Feedback from attendees showed the time is right for a more far-reaching, public and innovative approach. 

RAREfest” is a first of its kind. No other exhibition brings together all stakeholders to EDUCATE about what is available to improve the quality of life of people affected by Rare Diseases: earlier diagnostic tools; new treatments; new technologies; many of which are yet to reach patients. Although individually rare, collectively Rare Diseases affect 1 in 17 people with over 50% affecting children. Their isolation leads to ignorance of what is available.

The  Guildhall will become an interactive and ENGAGING exhibition where EDUCATION and sharing will take place, and connections and collaborations be made. Visitors will have the opportunity to take part in experiments, see live demonstrations, walk around in the shoes of those living with rare disease, through virtual reality and by hearing and watching inspiring films, lectures, short talks, performances and stories.

Prior to the event, up to 1000 school children will ENGAGE in an outreach programme, EDUCATING about rare diseases.  Children will meet scientists, health professionals, patients and charities to identify day to day issues affecting those with rare diseases and will take part in a ‘design solutions’ competition to EMPOWER people to overcome these. This work will be included as an exhibition at the festival.