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People with rare conditions often feel their voices are lost in the wind, vying for attention against other better-known diseases. Creating memorable, unique ways of communicating stories can help rare voices get heard.

Animation, memorability, insight

With a background in social science and as a member of the haemophilia community, Dr Rich Gorman is interested in people’s lived experiences of healthcare. Together with his colleagues Bobbie Farsides and Tony Gammidge, their project pushed the boundaries of academia, showcasing the great potential in arts-based methods for creating ways to evoke patient experiences.

Securing funding from The Wellcome Trust, the project invited rare families to participate in creative mediums like stop-motion animation and collage. It revealed innovative ways that messages can travel to others through emotions, insight, and memorability.

Poignantly, it revealed the impact of taking such messages back to clinical colleagues and policy members in translating the subjective experiences of those with rare diseases. The collection of works has been showcased to Brighton and Sussex Medical students who revelled in the benefit of gaining a more holistic understanding of life with a rare disease.

“We found just how powerful and evocative the creative pieces produced by families with rare conditions can be in communicating the challenges and joys of daily life with a rare disease.”

Dr Richard Gorman

Project co-ordinator

Academia meets subjectivity

Publishing their project meant overcoming barriers in the typical confines of academia – like academic journal submission lengths and format. It highlighted the potential for arts-based methods and the challenges in expressing their impact in the scholarly sphere.

The project aimed to collaborate with participants, working with them at every step, maintaining receptive to creative mediums that were both effective and fun to partake in.

Vaila Morrison participated in the project alongside her daughter, who has KAT6A syndrome. She described the value of connecting with other rare families, sharing ideas and mutual understandings.

 “An important part of the project has been expressing feelings not just around the rare condition itself, but also those evoked from navigating processes like obtaining a diagnosis, accessing healthcare, and the challenges surrounding this.”

Vaila Morrison

Project participant

At Rarefest22, the team will share some of the project’s spectacular artistic pieces, messages, and stories. They are excited to share some of the artistic pieces that the participants have created and to give them a wider platform

The collection of works provides an innovative means to help people outside the rare disease community understand more about what life can be like with a rare disease. There will also be an exciting opportunity to come and have a go!