RAREfest, an event organised by the Cambridge Rare Disease Network (CRDN), will bring together patients, scientists, researchers, clinicians, support groups, businesses, and the public, to engage and educate people about rare diseases.
As part of this event, they are holding a RAREfilm competition that encourages people involved with rare disease communities to submit a short film of about five minutes, and the fifteen with the most votes will be screened at RAREfest weekend. The competition has had a huge response, with sixteen groups submitting films and more than 1,000 votes so far, with more time still left until the closing date. PatientWorthy chatted to Jo Balfour, one of the organisers, about the competition.
Raising Awareness
This film competition is an opportunity for groups to connect with a wider audience. Jo says, “every time we host an event we look for opportunities for other charities, particularly small ones, to get their message out.” By hosting a film competition, she hopes that these smaller organisations will be able to “raise awareness, reach a wider audience, and reach a different audience.”
Hosting a film competition also helps to give groups a structure to work with. Many of the people who submit films may have considered making one before, but been put off by their lack of experience. As Jo points out, for the people “who want to make one but don’t know where to start”, having a deadline, guidelines, and a platform to show it at, could give them “that extra boost” to do it.
CRDN’s Poster Competition
This film competition builds on a similar project by the CRDN last year, which encouraged patients and patient groups to create posters. The call for submissions had a great turnout, with patients submitting 52 posters. Jo says some of the posters “were scientific, others made a very impassioned plea for help, or presented a very honest view of what life is like as a family.”
After the competition, many of the posters continued to be used by people who brought them to conferences, where posters from researchers and doctors are common, but it’s less usual to see ones made by patients. There are more plans for the future, as well. Jo says that they’re hoping to raise funds to circulate a booklet of the posters more widely, including at GP surgeries and to every medical student at Cambridge University – “it’s about making rare diseases part of doctors’ education.”
A Range of Submissions
Compared to the posters, the film competition is open to a wider range of submissions, including from researchers, doctors, and scientists, as well as patients and patient groups. Jo says this is deliberate, many scientists are “hidden away in a lab somewhere doing amazing stuff”, and this film competition gives them an opportunity to share their work with more people. Jo says, “Last year we were trying to give the patient groups an opportunity to have a voice because we felt it had been stifled. This year, we are trying to give all the stakeholders a voice. It’s about celebrating successes, and that’s across the board.”
The films will be screened on 1st December at RAREfest, where people will be given headphones to listen with.
