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Share Your Rare: rare genetic conditions and mental health

A new collaboration between scientists and artists hopes to raise awareness of the experiences of people living with rare genetic conditions.

The Wellcome Trust-funded project is a collaboration between Dr Sam Chawner, a researcher at Cardiff University’s MRC Centre, and Phenotypica, an art and science initiative by scientist Ben Murray and artist Neus Torres Tamarit.

Through Share Your Rare they are working together to help raise awareness of rare genetic conditions, asking people with lived experience to share their stories. The team have held several workshops and have covered themes such as: 

  • mental health in genetic conditions
  • experiences of accessing health services
  • education and school experiences
  • the experiences of people with genetic conditions during the COVID-19 pandemic

Their work aims to understand the link between rare genetic conditions and mental health problems and to communicate them in creative ways.

Following several successful workshops, they are now opening the project up to the public in the hope of capturing even more experiences.

What inspired the project?

Dr Chawner said, “Often, personal experiences can be lost in the research we do.

Through this project, we’re hoping to give the rare genetic condition community an opportunity to have their voices heard in society.

“By bringing in artists like Ben and Neus, who have a brilliant track record of engaging science art installations, we hope to not only pass the microphone to the rare genetic condition community but also create a new resource to engage with public and policymakers.”

Above is a poem that was written during one of the Share Your Rare workshops over the last year.

Ben and Neus from Phentopyica added:

We are keen to make sure the voice of the community is an integral part of this work and our goal is to make it as accessible as possible for people to give us feedback throughout this project and related future activities.

a piece of artwork made by Vanessa

The artwork above was created by Vanessa, who lives with Williams Syndrome.

Originally created for the CBBC program Art Ninja, Vanessa’s artwork shows a black and white image of her surrounded by everything she likes, does and enjoys. She selected the images from magazines or catalogues. Vanessa enjoyed making the collage and was happy to share it as part of the Share Your Rare project.

Take part

The team have come up with two fun and interesting ways to tell your story:

  • Writing – use a build-a-poem technique
  • Drawing – share your story by putting pens or pencils to paper

If you or a family member lives with a rare genetic condition, or you’re a researcher or health professional with an interest in the area, visit the Share Your Rare webpage to read more about how you can get involved.


Mike Owen

Mike is the Communications Officer for NCMH and the Division of Psychological Medicine at Cardiff University.

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