Share Your Rare
A new collaboration between scientists and artists hopes to raise awareness of the experiences of people affected by rare genetic conditions.
Sam’s research aims to understand the link between rare genetic conditions and mental health problems. Through Phenotypica, Ben and Neus create immersive artworks that play with and illuminate the mechanisms of genetics and evolution.
Funded by the Wellcome Trust ISSF3 Award, their project, Share Your Rare, hopes to cover themes such as mental health in genetic conditions, experiences of accessing health services, education and school experiences, and the experiences of people with genetic conditions during the COVID-19 pandemic.
Through workshops with people and families with lived experience of rare genetic conditions the team hope to hold an exhibition of artwork created from what they learn through these conversations.
Sam explained: “Through this project, we’re hoping to give the rare genetic condition community an opportunity to have their voices heard in society. Often, personal experiences can be lost in the research we do.
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.
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.”
If you’d like to learn more about the project or are interested in taking part, contact Sam on firstname.lastname@example.org and follow #ShareYourRare and #CreativeComplexity on Twitter.