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.
The event, inspired by other local educational festivals, will involve talks, activities, and displays. These include a dance performance by Unique Feet, a group of ten children who each have a rare condition, and a talk by Michael McGrath, who made history as the first person with a disability to lead expeditions to the North and South Poles after being diagnosed with muscular dystrophy at age 18. “We hope that having quite a general science arts festival will encourage a wider audience”, Jo says, “but most importantly we want to help rare disease communities to come together.”
Bringing People Together
One of the most important features of an event like this, according to Jo, is that it brings people together. “People go away feeling really inspired.” Sometimes, these meetings can lead to collaborations, such as doctors and patients working together on projects, or finding new ways to work together to raise awareness.
“Putting the right people in front of each other, it doesn’t happen very often.” – Jo
Another feature of the event that Jo says she’s particularly excited about is seeing a large variety of organisations get involved. Many companies that work in research and healthcare are participating, but so are other organisations. When Microsoft was approached for sponsorship, they agreed – and asked for an exhibition stand. The company has been working on a project called Torino that teaches children to code using physical objects. This method can be used by children who are visually impaired and blind, so it allows the whole class to learn together using the same technique. “It’s very inclusive,” Jo says. “It shows that anybody can get involved and support the rare disease community in some way.”
RAREfest is just one part of the Cambridge Rare Disease Network’s work, which also involves running local community groups, a companies forum, a rare disease nurse network, and other events. RAREfest is, Jo says, “a celebration of all the work we do, and helps us to show people what we do.” To find out more about RAREfest click here, and to learn more about the Cambridge Rare Disease Network and their great work, click here.