‘Beauty of Rare’ is a delicately designed photographic series, portraying the nuanced impact of rare disease on affected individuals and families lives. Each image contains select elements that relate to the sitters rare disease and the casual affect that the condition places on them.

Aim

‘Beauty of Rare’ encourages the viewer to find out more about the people involved and how their conditions affect their lives. Although 1 in 17 people in the UK will be affected by a rare disease, awareness remains limited. Each photograph was created around the individual and their condition, visually interspersed with intricate details that shed light on the impact of the rare disease.

Process

The series was shot within Wales at Soughton Hall Hotel near Mold and Gladstone Library in Hawarden, photographing sitters from across the UK. Each image was discussed with the sitter, gauging how their experience of rare disease could be visually told through object and placement. Interviews also took place that captured the intricate narrative of each sitters experience.

Impact

‘Beauty of Rare’ formed part of a suite of exhibitions over a three year period known as ‘Rare Aware’, designed to raise awareness of rare disease and it's impact upon affected families. This succession of exhibitions was on show for nearly 1 in every 3 days, being seen physically by 17,000 attendants at our 82 exhibitions, and attained a readership of over 48 million people through some of the UK’s biggest press platforms and social media outlets.

During this period, over 15,000 organisations viewed our work. Collating the feedback, we know that ‘Beauty of Rare’ helped change perspectives on rare disease, increased empathy, understanding and brought the realities of this community to the forefront of our audiences attention.

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