The Rare Disease Podcast

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How guidelines have the potential to confuse people, and why!

Saison 7 · Épisode 7

jeudi 17 octobre 2024 • Durée 35:33

Let us know what you think of this episode! We read every comment we receive.

For this week's episode of the podcast, Lucy speaks with Grace Knight, who is one of our ambassadors working as a junior doctor and is back for her second podcast with us. She got involved with M4RD when her brother was diagnosed with a rare disease, which changed her perspective of diagnosis and patient experience.

Lucy and Grace talk through the NICE (National Institute of Clinical Excellence) guidelines and discuss what has already been changed and what could be changed.

If you would like to listen to Grace's original episode, search 'Dr Grace, brother Eddie, Addison's Disease and ED'.

If you would like to download the handbook 'Mind the Gap - A handbook of clinical signs in Black and Brown skin', you can do so here https://www.blackandbrownskin.co.uk/mindthegap

Views, ideas and opinions expressed in this podcast are personal to the individual and Medics4RareDiseases does not accept responsibility for those expressed by guests.

M4RD receives funding from commercial companies which it works independently from. M4RD's Partners and Funders do not accept responsibility for any views expressed in this podcast.

M4RD does not endorse any companies or products that it receives sponsorship from. For more information please see the show notes and www.m4rd.org/sponsors #DareToThinkRare

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Mental health and victim blaming at work

Saison 7 · Épisode 7

jeudi 10 octobre 2024 • Durée 33:50

Let us know what you think of this episode! We read every comment we receive.

For this week's episode of the podcast, and to highlight Mental Health Awareness Day, our guest is Kym Winter, the CEO from Rareminds.

Rareminds is the first specialist, non profit, rare disease counselling and psychotherapy service in the UK (and possibly globally). The team has been providing online counselling and wellbeing services for rare disease charities since 2014.

Kym and Lucy chat about mental health and victim blaming at work.

To take part in the Rare Disease and Mental Health module mentioned in the podcast, head to M4RD Learn.

Views, ideas and opinions expressed in this podcast are personal to the individual and Medics4RareDiseases does not accept responsibility for those expressed by guests.

M4RD receives funding from commercial companies which it works independently from. M4RD's Partners and Funders do not accept responsibility for any views expressed in this podcast.

M4RD does not endorse any companies or products that it receives sponsorship from. For more information please see the show notes and www.m4rd.org/sponsors #DareToThinkRare

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Rare Disease 101 with Lucy McKay from the RSM 2024

Saison 6 · Épisode 7

jeudi 18 avril 2024 • Durée 34:20

Let us know what you think of this episode! We read every comment we receive.

3.5 million people in the UK live with a rare condition, which is a global point prevalence of 3.5 to 5.9%. In the UK that number equates to approximately the number of adults living with asthma.

For this week's episode of the podcast we listen back to Lucy's Rare Disease 101 talk from the RSM in February 2024.

Views, ideas and opinions expressed in this podcast are personal to the individual and Medics4RareDiseases does not accept responsibility for those expressed by guests.

M4RD receives funding from commercial companies which it works independently from. M4RD's Partners and Funders do not accept responsibility for any views expressed in this podcast.

M4RD does not endorse any companies or products that it receives sponsorship from. For more information please see the show notes and www.m4rd.org/sponsors #DareToThinkRare

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Think Ammonia with Metabolic Support UK

Saison 6 · Épisode 6

jeudi 11 avril 2024 • Durée 59:46

Let us know what you think of this episode! We read every comment we receive.

For this week’s episode of the podcast, Lucy chats to Jonathan Gibson who works as the Policy and Public Affairs Officer for Metabolic Support UK.

His background is in genetics and global health and he’s also worked for the NHS within a busy biomedical science laboratory for over four years undertaking the analysis of samples to ensure you receive the right treatment and diagnosis.

Within MS UK activist and key partner with communities to elicit change, utilising policy, data and research to develop creative campaigns with measurable goals to ensure action is taken to improve the lives of people living with inherited metabolic disorders.

If you would like to find out more about Metabolic Support UK, check out their website https://metabolicsupportuk.org/who-we-are/

Views, ideas and opinions expressed in this podcast are personal to the individual and Medics4RareDiseases does not accept responsibility for those expressed by guests.

M4RD receives funding from commercial companies which it works independently from. M4RD's Partners and Funders do not accept responsibility for any views expressed in this podcast.

M4RD does not endorse any companies or products that it receives sponsorship from. For more information please see the show notes and www.m4rd.org/sponsors #DareToThinkRare

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M4RD x Big Bang Theory with our Patient Ambassador Daval

Saison 6 · Épisode 5

jeudi 4 avril 2024 • Durée 51:29

Let us know what you think of this episode! We read every comment we receive.

For this week's episode of the podcast, Lucy is joined by Daval Amratlal, who is one of our patient ambassadors and has a rare skin condition called Autosomal Recessive Epidermolysis Bullosa Simplex. EBS is a rare skin condition where blistering is caused by trauma to the skin.

Daval graduated in 2021 with a BSc in physics with space science and started an MSc in Planetary Science in September 2023 at UCL. With a passion for science communication, making science more accessible to the general public, Daval has joined Medics for Rare Diseases as an ambassador to raise awareness of EBS, not just in the medical field, but also in the general public. Lucy and Daval discuss what happened to Pluto, best quotes from Jurassic Park and rare skin disorders.

Daval works with the charity, DEBRA UK, in an effort to improve the quality of life of not just patients with EB, but also people living with other rare conditions.

If you would like to learn more about DEBRA UK, you can visit their website here

https://www.debra.org.uk/

Views, ideas and opinions expressed in this podcast are personal to the individual and Medics4RareDiseases does not accept responsibility for those expressed by guests.

M4RD receives funding from commercial companies which it works independently from. M4RD's Partners and Funders do not accept responsibility for any views expressed in this podcast.

M4RD does not endorse any companies or products that it receives sponsorship from. For more information please see the show notes and www.m4rd.org/sponsors #DareToThinkRare

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Words Matter with Jono Lancaster from The Unusual Suspects 2024

Saison 6 · Épisode 4

jeudi 28 mars 2024 • Durée 20:07

Let us know what you think of this episode! We read every comment we receive.

It's been 10 years since Medics4RareDiseases first hosted The Unusual Suspects at The Royal Society of Medicine in association with the Medical Genetics section. It's amazing to see how far we have come over the years!

This year, we had a varied line-up of speakers that gave thought provoking talks throughout the afternoon and one of them was public speaker and author Jono Lancaster, who has Treacher Collins Syndrome and recently sold out Waterstones Picadilly with his book 'Not All Heroes Wear Capes'.

Listen back to Jono's inspirational talk now.

Views, ideas and opinions expressed in this podcast are personal to the individual and Medics4RareDiseases does not accept responsibility for those expressed by guests.

M4RD receives funding from commercial companies which it works independently from. M4RD's Partners and Funders do not accept responsibility for any views expressed in this podcast.

M4RD does not endorse any companies or products that it receives sponsorship from. For more information please see the show notes and www.m4rd.org/sponsors #DareToThinkRare

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My son with PTEN with Kelly Kearley from PTEN UKI

Saison 6 · Épisode 3

jeudi 21 mars 2024 • Durée 01:10:07

Let us know what you think of this episode! We read every comment we receive.

For this week's episode of the podcast, Lucy chats with Kelly Kearley who is the charity manager for PTEN UKI.

Kelly's son Austin was diagnosed with P10 harmatoma tumour syndrome. Hamatoma Tumor Syndrome, or often shortened to P10, is a rare genetic condition. And it causes multiple cancers in adulthood and autism in childhood.

You can find out more about PTEN UKI by visiting their website https://ptenuki.org/

More information about Cerebra, also mentioned in this podcast can be found here https://cerebra.org.uk/

Views, ideas and opinions expressed in this podcast are personal to the individual and Medics4RareDiseases does not accept responsibility for those expressed by guests.

M4RD receives funding from commercial companies which it works independently from. M4RD's Partners and Funders do not accept responsibility for any views expressed in this podcast.

M4RD does not endorse any companies or products that it receives sponsorship from. For more information please see the show notes and www.m4rd.org/sponsors #DareToThinkRare

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Think Rare, Think Genetics with Bonnie Jackson

Saison 6 · Épisode 2

jeudi 14 mars 2024 • Durée 50:36

Let us know what you think of this episode! We read every comment we receive.

For this week's episode of the podcast, Lucy speaks with Bonnie Jackson who is the London Regional Coordinator at Annabelle’s Challenge Vascular EDS Charity, who are the leading charity for Vascular Ehlers-Danlos syndrome in the UK.

Her daughter Mia was diagnosed with Vascular EDS in August 2021 after 7 years. Mia is now 9 years old and in 18 months both her and the charity have raised over £62,000.00 for Vascular EDS research and support, with lots more events in the pipeline.

Bonnie shares her journey so far and how she has been supported by Annabelle's Challenge Vascular EDS Charity.

Views, ideas and opinions expressed in this podcast are personal to the individual and Medics4RareDiseases does not accept responsibility for those expressed by guests.

M4RD receives funding from commercial companies which it works independently from. M4RD's Partners and Funders do not accept responsibility for any views expressed in this podcast.

M4RD does not endorse any companies or products that it receives sponsorship from. For more information please see the show notes and www.m4rd.org/sponsors #DareToThinkRare

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Baroness Nicola Blackwood on Politics and Patient Care

Saison 6 · Épisode 1

jeudi 7 mars 2024 • Durée 52:33

Let us know what you think of this episode! We read every comment we receive.

Welcome to the brand new season of the The Rare Disease Podcast for Medics! To kick off the season, we have the wonderful Baroness Nicola Blackwood who speaks to us all about Ehlers-Danlos, patient care and her work in politics.

Nicola is a leader in science and entrepreneurship. She is a member of the House of Lords and Chair of Genomics England and Oxford University Innovation. Nicola is also a board member of the biotechnology company BioNTech.

Nicola served as Minister for Innovation in the Department of Health and Social Care under two prime ministers, where she led on life sciences, NHS data and digital transformation, and global health security.

Views, ideas and opinions expressed in this podcast are personal to the individual and Medics4RareDiseases does not accept responsibility for those expressed by guests.

M4RD receives funding from commercial companies which it works independently from. M4RD's Partners and Funders do not accept responsibility for any views expressed in this podcast.

M4RD does not endorse any companies or products that it receives sponsorship from. For more information please see the show notes and www.m4rd.org/sponsors #DareToThinkRare

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Special Episode: Hope Russell-Winter from The Voice UK

Saison 5 · Épisode 10

vendredi 26 janvier 2024 • Durée 01:05:13

Let us know what you think of this episode! We read every comment we receive.

This week's episode is a special one-off episode before the launch of Season 6 this March!

Lucy speaks with our ambassador Hope Russell-Winter who was a recent runner up on The Voice UK! Hope tells us all about her experience with Multiple Endocrine Neoplasia type 1, her time on the Voice UK and why she is an ambassador for M4RD.

Hope will be performing at The Social in London on March 7th, please visit her social media for tickets.

https://www.instagram.com/hopewintermusic/?hl=en-gb

Views, ideas and opinions expressed in this podcast are personal to the individual and Medics4RareDiseases does not accept responsibility for those expressed by guests.

M4RD receives funding from commercial companies which it works independently from. M4RD's Partners and Funders do not accept responsibility for any views expressed in this podcast.

M4RD does not endorse any companies or products that it receives sponsorship from. For more information please see the show notes and www.m4rd.org/sponsors #DareToThinkRare

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