With 1 in 17 people affected by rare disease you would think everyone would be interested to learn about the huge impact it has on individuals, their families and communities and yet sadly this is not the case. In the years since my own son was diagnosed, I have met hundreds of families affected by rare disease and the one thing most report feeling is isolated, because there is so little understanding. With an estimated 6000 rare diseases affecting 35 million people across Europe alone I wanted to create a project that encouraged people to want to know more.
The Beauty of Rare project introduces people to a selection of rare diseases and with each image I have tried to include quirky aspects to the condition or its impact. Each image is accompanied by the individual’s own story in which they share how the disease affects them.
The project cannot make people better or help them find a miraculous cure but it can help people who feel isolated and in need to reach out to their community, breaking down barriers of isolation.
More info: samebutdifferentcic.org.uk