Whitworth_group

16/01/2023

Η σειρά ειδικά αφιερωμένων “Genetic Sounds” επιστρέφει με έναν δεύτερο κύκλο εκπομπών το 2023.
Στο πρώτο επεισόδιο με τίτλο “Αξιοποίηση Aφρικανικού γενετικού πληθυσμού για την παγκόσμια υγεία”, συζητάται το πλαίσιο της Αφρικανικής Εταιρείας Ανθρώπινης Γενετικής καθώς και η ισότητα στην Αφρικανική έρευνα.
Μία ενδιαφέρουσα συζήτηση με τον καθηγητή Ambroise Wonkam, πρόεδρο της Αφρικανικής Εταιρείας Ανθρώπινης Γενετικής, την καθηγήτρια Ανθρώπινης Γενετικής Michele Ramsay με έδρα στο πανεπιστήμιο του Witswatersrand, Johannesburg, την Dr Rokhaya Ndiaye, από την εταιρεία Ανθρώπινης Γενετικής της Σενεγάλης και την Dr Vicky Nembaware, γραμματέα της Αφρικανικής Εταιρείας Ανθρώπινης Γενετικής.
Μπορείτε να ακούσετε το επεισόδιο αυτό εδώ 👉 https://eshg.buzzsprout.com/1931247/11985435-e1-harnessing-african-genetic-population-for-global-health
#ήχοιγενετικής #γενετική #γενετικήέρευνα ESHG - European Society of Human Genetics Whitworth_group

17/05/2022

Τώρα που η #γενετική έχει καταλάβει ηγετική θέση στα #ιατρικά δρώμενα, είναι ακόμα πιο σκόπιμο να εξοικειωθεί το ευρύτερο κοινό με αυτήν μέσα από μία σειρά ειδικά αφιερωμένων .
Έτσι λοιπόν, εκ μέρους της Εκπαιδευτικής Επιτροπής του Ευρωπαϊκού Συλλόγου Ανθρώπινης Γενετικής - ESHG - European Society of Human Genetics, συνεργάστηκα με την ομάδα Whitworth - Whitworth_group, για την ανάπτυξη μιας σειράς podcast γύρω από την ανθρώπινη γενετική και τρέχοντα κοινωνικά θέματα.
Σας περιμένω την πρώτη Παρασκευή κάθε μήνα, στον αγαπημένο σας podcast player!
👉 Διαβάστε περισσότερα εδώ: https://bit.ly/3wscEyc
#γενετικόσύνδρομο Eshg - European Society of Human Genetics #εγκυμοσυνη #νεογεννητο #γονεις #υπηρεσιεςγενετικης #γενετιστης #γενετιστρια #ιατρός #γιατρός

09/02/2022

We've got a special live podcast for

With amazing guests - Dr John Ealing, Catherine , and Dr Andrew Swale

Thanks to

Be in the zoom audience - register now: bit.ly/RareDLive22

MND – a new test directory and family implications Join our virtual live audience for a special podcast recording to coincide with Rare Disease Day 2022. Join us for a continue reading

16/04/2021

We are looking forward to having more conversations about families & genetics with Nichola Garde & Mariangels Ferrer Duch
https://www.aft.org.uk

03/03/2021

We're so excited to release the final scheduled episode from Series 1 of our podcast series

Recorded back in Feb 2020 with Prof Rebecca Bennett, Prof Kevin Southern and our very own Dr Fiona Ulph talking genetic testing and the choices parents are given at different stages of their journey

https://rare-d.com/podcasts/how-rare-is-your-baby-s1-ep10/

(PS. more "special episodes" coming soon...)

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 continue reading

28/02/2021

It's today! To celebrate all the activities going on across the world to support we have a special episode about rare with Prof Gareth Evans and a panel of guests with lived experience of rare inherited cancer.

Join our virtual audience and listen to the conversation:

https://zoom.us/j/93963040111

Doors are open at 11am this morning (Sunday 28th)... see you there?

Zoom is the leader in modern enterprise video communications, with an easy, reliable cloud platform for video and audio conferencing, chat, and webinars across mobile, desktop, and room systems. Zoom Rooms is the original software-based conference room solution used around the world in board, confer...

18/02/2021

Rare Cancer- how Rare is Rare? We will invite Prof Gareth Evans & a panel of young people living with rare inherited cancer to talk about -Join us for a live podcast to Celebrate at https://rare-d.com/rare-d-live-2021/

RARE CANCER – how rare is rare?’ 11am-1pm GMT Sunday 28th February 2021 Join our live audience for a special podcast event to celebrate Rare Disease Day 2021 We had continue reading

16/02/2021

A year ago we were getting ready for the - ://www.whitworth.manchester.ac.uk -We asked the children-What does RARE mean to you? Selma said: “Different & you don’t usually see it”

07/02/2021

Here is the expected film. It is short and beautiful. Please enjoy!
Thanks Nick Jordan for your art.
https://vimeo.com/465867882

Rare Frequencies is a film which draws upon conversations with people impacted by rare health conditions, recorded with members of the public, patients and practitioners…

28/11/2020

And we're off!
The platform is open!
Login, update your profile and get your bearings before the first talk at 9:45am 👍
If you haven't registered yet, don't worry! Head straight here: https://rarefest20.vfairs.com/ and you can sign up now!

09/10/2020

Sharing stories can move us all and we can re-connect with what is important.
Check out our latest episode where Nichola Garde
gets to talk about her favourite author
Brené Brown & Mariangels Ferrer explores ideas using narrative therapy questions to encourage us all to listen & share!
https://rare-d.com/podcasts/international-conversations-during-rare-times-mediterranean-s1-e9/

Continuing the a change from our usual studio podcast recordings, we talk over Zoom with our special guest Dr. Domenico Coviello, and guest listeners Dr. Sofia Douzgou, Dr. Carlos Chimpen continue reading

30/09/2020

To celebrate today why not listen again to our International episodes

rare-d.com

Here are some of our rare moments - what's yours?

23/09/2020

“Mi commuovo facilmente”: I am easily moved.

Asking Narrative Questions can move a genetic medical doctor.
-In this episode you can hear Dr Domenico Coviello re-connecting with what is important to him- and much more !-listen to our last podcast. Please share what you think and continue with us the conversation.
Out now!

https://rare-d.com/podcasts/international-conversations-during-rare-times-mediterranean-s1-e9/

Continuing the a change from our usual studio podcast recordings, we talk over Zoom with our special guest Dr. Domenico Coviello, and guest listeners Dr. Sofia Douzgou, Dr. Carlos Chimpen continue reading

29/07/2020

Continuing the a change from our usual studio podcast recordings, we talk over Zoom with in Dorica Dan, with additional guest listeners, Dr. Ovidiu Damian, and our very own Dr. Ramona Moldovan.

https://bit.ly/RARE-D-EP8

Continuing the a change from our usual studio podcast recordings, we talk over Zoom with in Dorica Dan, with additional guest listeners, Dr. Ovidiu Damian, and our very own Dr. continue reading

19/06/2020

In our latest podcast episode we talk International with Prof Shubha Padke in India and hear from Dr Charu Deshpande, Mr Suyong Sathe and our very own Dr Rhona Macloed.

bit.ly/RARE-D-EP7

Continuing the a change from our usual studio podcast recordings, we talk over Zoom with Prof Shubha Phadke in India, with additional guest listeners, Dr Charu Deshpande, Mr Suyong Sathe, continue reading

27/05/2020

All those loving our podcast can now show just how much by voting for us in the British Podcast Awards - Listeners' Choice Award

It's really easy - head over to
britishpodcastawards.com/vote and search for 'rare d'

Thank you for your support!

30/04/2020

Rare times call for rare conversations

In our first international podcast we talk with Prof Jie Ding in China about Covid 19 and what the future looks like through this situation

Introducing a new format, inspired by narrative practice

bit.ly/RARE-D-EP6

In a change from our usual podcast recordings, we talk over Zoom with Dr Jei Ding of Peking University First Hospital, supported by guest listener Dr Tao Wang in the continue reading

31/03/2020

Just how rare are you?

At our event in February we recorded episode 5 of our podcast. 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 - and even took questions from the live audience!

We find out what rare actually means - and that we're not so rare after all!

https://rare-d.com/podcasts/just-how-rare-are-you-s1-e5/

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 continue reading

01/03/2020

On the back of our first event yesterday at we're releasing Ep4 of our podcast series - chatting with Professor Dian Donnai, Sally Hatton, and Professor Andrew Read

https://rare-d.com/podcasts/how-could-rare-gene-discoveries-diagnoses-impact-on-your-life-s1-e4/

Ep5 was recorded live yesterday - released later this month so be sure to subscribe. Our series is available on Apple, Spotify, Google, Alexa, and loads of other great services. Find out more on the website.

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 continue reading

22/02/2020

It's only a week to go to a very rare day. On Saturday 29th Feb we have our very first RARE/D LIVE event happening at Whitworth Art Gallery in Manchester.

From 10am-4pm we have a fun schedule of activities for all ages, a live recording of our podcast series where you can take part, and announcement of the winners of our Rare Art Competition. There's even a tour of the real genetic labs for a limited number of people.

So get down there and see how genetics really does make being rare less common than you think.

For more information, check out...
https://rare-d.com/rare-d-live/

We have an exciting programme of activities and conversations planned for our first amazing RARE/D LIVE event which will be taking part at The Whitworth Art Gallery in Manchester on continue reading

31/01/2020

In a very different podcast 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 chat 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 grown man hiding in a suitcase!

https://rare-d.com/podcasts/discussions-about-hd-within-families-and-the-choices-we-make-in-life-s1-ep3/

In a very different episode, we chat with our very own Jay Roche and his wife Sarah about the families long connection with Manchester Genetics Department and how different things continue reading

03/01/2020

Listen to our chat with Professor Bill Newman and find out why the 100,000 Genomes Project was started in 2012, and how it may change health care in the future.

https://rare-d.com/podcasts/s1-ep1/

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?

29/12/2019

A RARE day indeed with the double release of episodes 1 and 2 of our

In episode 1, Nichola and Mariangels speak with Professor Bill Newman from The Manchester Centre for Genomic Medicine about the 100,000 genomes project and how it may change health care.

In episode 2, Nichola and Mariangels talk to Dr John McDermott, Professor Margaret Brazier, Rachel Mahood, and Rachel Corry, all from the PALOH Study group, about ethical dilemmas in clinical trials and first Point of Care Genomic test to be delivered in NICU.

LISTEN to both NOW at https://rare-d.com/

Our Podcast series will be available across all popular platforms and with moving pictures on YouTube.

We'd love you to watch/listen and continue the conversations with us across the socials.

28/12/2019

Just 1 more day until the double release of episodes 1 and 2 of our

In episode 1, Nichola and Mariangels talk to Dr John McDermott, Professor Margaret Brazier, Rachel Mahood, and Rachel Corry, all from the PALOH Study group, about ethical dilemmas in clinical trials and first Point of Care Genomic test to be delivered in NICU.

Find out more at https://rare-d.com/podcasts/s1-ep2/

Our Podcast series will be available across all popular platforms and with moving pictures on YouTube.

We'd love you to watch/listen and continue the conversations with us across the socials.

27/12/2019

Just 2 more days until the double release of episodes 1 and 2 of our

In episode 1, Nichola and Mariangels speak with Professor Bill Newman from The Manchester Centre for Genomic Medicine about the 100,000 genomes project and how it may change health care.

25/12/2019

Merry Christmas to our followers from all of us at the Whitworth Group!

Looking forward to sharing episodes 1 and 2 with you all on the 29th!

20/12/2019

RARE stimulates and capture the public conversation about how genomic advances will change how we view health, rare diseases and what "rare" means.

Our podcast series will open up the latest research and explore what it means to be rare.

Find out more and join in at https://www.rare-d.com