In 2021 I was invited by Prof Bobbie Farsides and Dr Rich Gorman of Brighton and Sussex Medical School to collaborate on a unique qualitative research project, facilitating creative writing with a group of families affected by rare genetic conditions. This research programme was part of the Wellcome Trust funded Eppigen project.
You can read the research review paper by Rich Gorman and Bobbie Farsides, recently published in BMJ Medical Humanities HERE.
https://mh.bmj.com/content/early/2022/04/13/medhum-2021-012346
Gorman R, Farsides B Writing the worlds of genomic medicine: experiences of using participatory-writing to understand life with rare conditions Medical Humanities Published Online First: 13 April 2022. doi: 10.1136/medhum-2021-012346
Twitter @SustainableRich, @Ethixbird @WellcomeTrust @eppigen