13 episodes

Conversations started by The Whitworth Group

RARE/D Conversations RARE/D Manchester

    • Health & Fitness

Conversations started by The Whitworth Group

    S1/EP1 - RARE OPPORTUNITIES AND HOW WILL THE 100,000 GENOME PROJECT CHANGE HEALTH CARE?

    S1/EP1 - RARE OPPORTUNITIES AND HOW WILL THE 100,000 GENOME PROJECT CHANGE HEALTH CARE?

    In our first (pilot) episode we talk with Professor Bill Newman from Manchester 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.Our RARE/D ...

    • 32 min
    S1/EP2 - ETHICAL DILEMMAS IN GENOMIC TESTING: RARE OR NOT SO RARE?

    S1/EP2 - ETHICAL DILEMMAS IN GENOMIC TESTING: RARE OR NOT SO RARE?

    In our second episode we talk to Dr John McDermott, Professor Margaret Brazier, Rachel Mahood, and Rachel Corry about ethical dilemmas in clinical trials and first Point of Care Genomic test to be delivered in NICU.Dr John McDermott is an Academic Clinical Fellow at Manchester Centre for Genomic Medicine and works on the PALOH study.Professor Margaret Brazier is Professor of Law at the University of Manchester and is one of the foremost medical Lawyers in the United Kingdom. She has an intern...

    • 43 min
    S1/EP3 - DISCUSSIONS ABOUT HD WITHIN FAMILIES AND THE CHOICES WE MAKE IN LIFE

    S1/EP3 - DISCUSSIONS ABOUT HD WITHIN FAMILIES AND THE CHOICES WE MAKE IN LIFE

    In a very different episode, we chat with our very own Jay Roche and his wife Sarah about the family's long connection with Manchester Genetics Department and how different things have shaped their story.We discuss about making conscious decisions about both small and big aspects of our lives, from parenting to careers. We hear about how we all perceive 'normal' differently, how we recognise the different types of both visible and invisible support around every single one of us, and a g...

    • 30 min
    S1/EP4 - HOW COULD RARE GENE DISCOVERIES/DIAGNOSIS IMPACT ON YOUR LIFE?

    S1/EP4 - HOW COULD RARE GENE DISCOVERIES/DIAGNOSIS IMPACT ON YOUR LIFE?

    In our 4th episode we chat to Professor Dian Donnai, Sally Hatton, and Professor Andrew Read about the many topics around the scientific discoveries the importance of thinking about the people they impact.

    • 44 min
    S1/EP5 - JUST HOW RARE ARE YOU?

    S1/EP5 - JUST HOW RARE ARE YOU?

    A very special live recording at The Whitworth Art Gallery in Manchester where our group first met - we chat about the human genome with Genetic Counsellor Sasha Henriques and Dr George Burghel from Manchester Genomics, and some local schoolchildren - the patients of tomorrow.We find out what rare actually means - and that we're not so rare after all!The recording was part of our RARE/D LIVE event - just one of the activities happening around the globe to support Rare Disease Day 2020.

    • 58 min
    S1/EP6 - RARE COVID TIMES - CHINA

    S1/EP6 - RARE COVID TIMES - CHINA

    In a change from our usual podcast recordings, we talk over Zoom with Prof Jie Ding of Peking University First Hospital, supported by guest listener Prof Tao Wang in the conversation and with additional guest listeners, Prof Lauren Kerzin-Storrar and our very own Jay Roche.Not originally planned in this series, the recording is the first of three special RARE/D international conversations, in which we will be talking RARE/D in the International context, and in the context of the affect Covid ...

    • 42 min

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