‘Days of Rare’ invites people into the rare disease world by way of our Rare Room! Each scene takes place in our specially created set and aims to introduce quirky elements of the diseases to the viewer. Created by our Creative Director and photographer, Ceridwen Hughes. All people taking part are affected by a rare disease.

“As part of our desire to give people a stronger voice in their community we built the Rare Room and through discussions with the participants, we designed a set, to bring out the unusual aspects to their disease. The exhibition sits alongside their written narratives, videos and our podcast series."
"We are incredibly grateful to everyone who took the time to take part in this project and to share their experiences with us. By raising awareness it is hoped there will be more understanding and we will continue to break down barriers.”