RARE/D Conversations

RARE/D Manchester

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RARE/D Conversations

Conversations started by The Whitworth Group

EPISODE 1

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 ...

33 min
EPISODE 2

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
EPISODE 3

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
EPISODE 4

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
EPISODE 5

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
EPISODE 6

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
EPISODE 7

S1/EP7 - RARE COVID TIMES - INDIA

Continuing the change from our usual podcast recordings, we talk over Zoom with Prof Shubha Phadke in India, with additional guest listeners, Dr Charu Deshpande, Mr Suyong Sathe, and our very own Dr Rhona Macleod.Not originally planned in this series, the recording is the second of some 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 19 is having on everyone.Our guests will have the chance to s...

44 min
EPISODE 8

S1/EP8 - RARE COVID TIMES - ROMANIA

Continuing the change from our usual podcast recordings, we talk over Zoom with special guest Dorica Dan, with additional guest listeners, Dr. Ovidiu Damian, and our very own Dr. Ramona Moldovan.Not originally planned in this series, the recording is the second of some 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 19 is having on everyone.Our guests will have the chance to share their ideas i...

45 min

See All Season 1 (13)

Conversations started by The Whitworth Group

Creator

RARE/D Manchester
Episodes

13
Seasons

1
Rating

Clean
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RARE/D Conversations