‘Beauty of Rare’ is a photographic series designed to capture people's curiosity and interest. Created by our Creative Director and photographer, Ceridwen Hughes, each image is carefully designed to include elements that relate to the rare disease and its impact on the lives of those who have the condition. All people taking part are affected by a rare disease.
“We wanted to create something that encouraged people to want to know more and to find out about the people involved and their conditions. Despite 1 in 17 people being affected by a rare disease in the UK awareness is limited. A great deal of time and thought has gone into the planning of each image. Each scene was created around the individual and their condition with small details that on first glance may not make sense but on reading the narrative will become clearer."
"We are incredibly grateful to everyone who took the time to take part in this project as they travelled from all parts of the UK. Our thanks also go to Soughton Hall Hotel near Mold and Gladstone Library in Hawarden for allowing us to use their wonderful venues for the photography and to the Big Lottery Fund Wales and F. Hoffmann-La Roche Ltd who have enabled us to create this project.”
View the Exhibition
Read their Stories
Click on any of the images below to read more about how their rare disease impacts their life.
With grateful support from:-