Share Your Rare project aims to raise awareness of rare genetic conditions and mental health
12 August 2021
A new collaboration between scientists and artists hopes to raise awareness of the experiences of people affected by rare genetic conditions.
Cardiff University's Dr. Sam Chawner and Phenotypica, an initiative created by computer scientist Ben Murray and artist Neus Torres Tamarit, are leading the project.
Dr. Chawner’s work aims to understand the link between rare genetic conditions and mental health problems, with Phenotypica in support to communicate people's experiences in creative ways.
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.
Phenotypica's Ben and Neus said, “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.”
The event brought families together and #ShareYourRare to life as thoughts, memories and experiences of the last year were drawn on the pavement, on paper and in poems.
Visitors wrote cinquain poems and drew their favourite things or experiences from this summer.
With over thousand in attendance it was a brilliant day out for all involved.
Get involved
You too can get involved as the campaign continues to run online.
You can learn more about the project and take part to help raise awareness of rare genetic and mental health conditions, or contact Sam on chawnersj@cardiff.ac.uk and follow #ShareYourRare and #CreativeComplexity on Twitter.
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Medical Research Foundation Fellow, Division of Psychological Medicine and Clinical Neurosciences
