We are Genomics England and our vision is to create a world where everyone benefits from genomic healthcare. Introducing our refreshed podcast identity: Behind the Genes, previously known as The G Word. Join us every fortnight, where we cover everything from the latest in cutting-edge research to real-life stories from those affected by rare conditions and cancer. With thoughtful conversations, we take you behind the science. You can also tune in to our Genomics 101 explainer series which breaks down complex terms in under 10 minutes.
Episodes
Wednesday Oct 27, 2021
Dr Nick Sireau: The impact of patient groups
Wednesday Oct 27, 2021
Wednesday Oct 27, 2021
“What Findacure does is try to promote this concept of drug repurposing, and all the issues around there. That is another area of hope for rare diseases.”
In this week’s episode of The G Word #sciencepodcast, our Chief Executive Officer, Chris Wigley, is joined by Dr Nick Sireau, the CEO and Chairman of the AKU Society and Co-founder and Chairman of Findacure. Additionally, Nick is a fellow of the Ashoka global fellowship of social entrepreneurs.
Today Nick talks about alkaptonuria (AKU also known as “black bone disease”), an ultra-rare genetic disease that his two children have and the DevelopAKUre project that was established to improve the understanding of alkaptonuria. Chis and Nick discuss Findacure which Nick co-founded to share advice and knowledge between patient groups, they also talk about how patient groups help drug discovery.