Share Your Rare: Gallery of rare genetic conditions project now available online

Artists and scientists collaborate to share the stories of the rare genetic condition community.

Share Your Rare was a Wellcome Trust public engagement project led by Dr Sam Chawner, who is a researcher at Cardiff University, and Phenotypica, an art and science initiative by scientist Ben Murray and artist Neus Torres Tamarit.

The project aimed to raise awareness of the experiences of people affected by rare genetic conditions.

Dr Chawner said, "One in seventeen people in the UK are affected by rare conditions, yet awareness of these conditions is low.

“The Share Your Rare project was created to provide a creative voice to the rare condition community."

The artwork, created online and in-person at events, is now available to view in an online gallery.

Through online workshops with people and families with lived experiences of rare genetic conditions the team used a story-telling technique to help attendees write a short poem about their experiences.

The technique used by the team was the cinquain poem, a five-line poem that is built by answering five questions:

1. What is the subject of my poem?
2. Can you think of two words or phrases that describe it?
3. Can you think of three action words or phrases that describe it?
4. How do I feel about the subject?
5. What is another word for my subject or a conclusion of my subject?

Neus Torres Tamarit from Phenotypica explained the choice of technique, “We wanted a form of communication that levelled the playing field between people who have and live with rare genetic conditions and people who study and treat them. As very few people write poetry on a regular basis, we thought of poetry as an ideal mechanism.

“The beauty of the Cinquain poem is that it also lends itself to “braiding”, in which the lines from a number of poems can be woven together to make new poems.

“This helped us to take peoples’ individual perspectives and weave them together into shared experiences and also serves as an analogy for the genetic process of recombination.”

The project was delivered amidst the COVID-19 pandemic, which provided a unique snapshot of the experiences of people with genetic conditions during that time.

It involved online workshops with the Genetic Alliance and collaboration with Cerebra and IMAGINE-ID, as well as contributions from the online rare genetic condition community.

Read the poems from the Genetic Alliance workshops and watch the video of artwork created for the project, inspired by the variety and diversity of experiences within the rare disease community.

The project had a new audience in-person at August 2021's Subatomic Circus, hosted by Cardiff Science Festival, as the team worked with children and their families to capture their experiences in the Summer of 2021 as lockdown restrictions were lifted.

Dr Chawner explained, “The event opened up conversations on genomics, mental health and art”.

“We also used this opportunity to explore the pandemic experience of families, and to share their rare summer.”

“Children created an art installation along Museum Avenue in the centre of Cardiff, drawing the experience of summer coming out of the 2021 lockdown.

Dr Chawner concluded, “We’d like to thank everyone who got involved in the project to help bring Share Your Rare to life.”

Watch the street art come to life on the Phenotypica website.