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RARE/D Conversations

Health & Wellness Podcasts

Conversations started by The Whitworth Group

Conversations started by The Whitworth Group

Location:

United Kingdom

Description:

Conversations started by The Whitworth Group

Language:

English


Episodes

SPECIAL EVENT - CONVERSATIONS ABOUT MND

4/13/2022
A special bonus episode with conversation about genomic testing considerations in Motor Neurone Disease. This was recorded over Zoom with a live audience to support all of the activities happening around the globe for Rare Disease Day 2022. Chatting to Dr John Ealing, Catherine and Adrian Halpenny, Dr Andrew Swale, Samantha Holden-Smith, Dr Amina Chaouch, Dr Audrey Smith, and our very own Dr Rhona Macloed. Brought to you with the help of the North West Genomic Laboratory Hub,University of...

Duration:01:02:22

SPECIAL EVENT (pt2) - JUST HOW RARE IS RARE CANCER?

3/25/2021
PART 2 of a Rare Cancer special. A very special BONUS EPISODE, made with the amazing support from the GMSA - this was recorded over Zoom with a live audience to support all of the activities happening around the globe for Rare Disease Day 2021. Chatting to Professor Gareth Evans, Amy Hargreaves,Freddie Gualda-Wallace, Fern Hammill, and Shakil Bukhari. It was such a great virtual event with varied conversations and amazing questions from the audience that we had to keep it all in and make...

Duration:00:53:43

SPECIAL EVENT (pt1) - JUST HOW RARE IS RARE CANCER?

3/25/2021
PART 1 of a Rare Cancer special. A very special BONUS EPISODE, made with the amazing support from the GMSA - this was recorded over Zoom with a live audience to support all of the activities happening around the globe for Rare Disease Day 2021. Chatting to Professor Gareth Evans, Amy Hargreaves,Freddie Gualda-Wallace, Fern Hammill, and Shakil Bukhari. It was such a great virtual event with varied conversations and amazing questions from the audience that we had to keep it all in and make...

Duration:00:40:37

S1/EP10 - HOW RARE IS YOUR BABY?

3/3/2021
In the final scheduled episode of Series 1, we talk to Professor Rebecca Bennett, Professor Kevin Southern, and our very own Dr. Fiona Ulph about genetic testing and the choices that parents are given at different stages of their journey. This episode was the final one recorded in the studio in February 2020, before lockdown and current social distancing guidelines. BREAKING NEWS: coming soon is a special rare cancers episode recorded at our virtual Rare/D Live event on 28th February 2021...

Duration:00:49:41

S1/EP9 - RARE COVID TIMES - MEDITERRANEAN

9/21/2020
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...

Duration:00:47:59

S1/EP8 - RARE COVID TIMES - ROMANIA

7/29/2020
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...

Duration:00:45:07

S1/EP7 - RARE COVID TIMES - INDIA

6/17/2020
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...

Duration:00:43:35

S1/EP6 - RARE COVID TIMES - CHINA

4/29/2020
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...

Duration:00:42:02

S1/EP5 - JUST HOW RARE ARE YOU?

3/31/2020
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.

Duration:00:58:06

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

3/1/2020
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.

Duration:00:44:09

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

1/31/2020
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...

Duration:00:30:22

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

12/29/2019
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...

Duration:00:32:34

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

12/29/2019
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...

Duration:00:43:18