Launch of Rare/D Podcasts - Genomic conversations for all the health care workforce

 LISTEN NOW! https://rare-d.com

 The Whitworth Group has a shared interest in the definition of  ‘rare’ and what that means to us all.  This has led to “RARE” – a project funded by the ESRC via the University of Manchester.

 

“RARE” aims to stimulate and capture public conversation about one of the biggest changes in how we think about health – what does it mean to have a rare disease and how we all may become “RARE” when genomics becomes part of mainstream healthcare. This project will focus on the psychological, ethical and economic debates and in turn show how social science is helping to shape the health care of the future.

The central thread of “RARE” comprises is a series of publicly accessible conversations (initially as a podcast series) which explore the concept of “RARE”  – how it is already impacting on our lives, and we can alter that impact.  They are hosted by Nichola Garde, teacher and consultant to the Manchester Centre for Genomic Medicine’s Science and Training programme on communication skills & Mariangels Ferrer-Duch, clinical psychologist and narrative therapist, and consultant to the Manchester Centre for Genomic Medicine’s service improvement initiative).  “RARE” is novel as it utilising narrative expertise to ensure the conversations are able to address and hopefully reduce the stigma and isolation often encountered by those with a rare disease.

The podcast content will be used by the Whitworth Group to co-create two public events with a patient representative group – a Rare disease day event at the Whitworth Gallery (29th February 2020) and a live podcast at a festival (July, 2020). At both of these events the public will be asked to share their perceptions of what “rare” means.

 

Listen to  Episodes 1 and 2!   https://rare-d.com

 

In Episode 1 Rare/D  (pilot) episode Professor Bill Newman from Manchester talks about Rare opportunities and how will the 100, 000 Genomes Project change health care?

Professor Bill Newman is Professor of Translational Genomic Medicine in The Manchester Centre for Genomic Medicine at the University of Manchester and Honorary Consultant at Manchester University NHS Foundation Trust. He is also Director of the Greater Manchester Genomic Medicine Centre for the 100,000 Genomes Project.

LISTEN NOW! https://rare-d.com