The Rare Disease Podcast
Interviews with patients, clinicians, advocates, students, researchers focusing on rare disease in clinical medicine. This podcast is brought to you by Medics4RareDiseases who are asking medical professionals to #daretothinkrare in order to improve diagnosis, clinical care and research in this neglected but really important field of medicine. 350 million people in the UK live with a rare disease so while each disease is individually rare, together rare diseases are common.
Podcast distributors create their own transcripts and M4RD doesn’t take responsibility for them
Episodes
74 episodes
Looking back, Moving Forward: The Medics for Rare Disease highlights of 2024
For this week's episode of the podcast, Lucy invites the M4RD team on with her to discuss this year's highlights for the charity and the exciting plans we have for 2025!We would like to take the opportunity to say a massive thank you to...
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Season 7
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Episode 15
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17:25
Why you should read 'Two for Joy' - the true story of one families journey to happiness with severely disabled twins
For this week's episode of the podcast, Lucy and our ambassador Maddy speak to the author James Melville Ross all about his book 'Two for Joy'.'Two for Joy' is the heart-warming true story of disabled twins Thomas and Alice, and their d...
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Season 7
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Episode 14
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58:28
Bombardier Blood: The man with Haemophilia who climbed the seven summits!
For this week's episode of the podcast, Lucy reviews the documentary Bombardier Blood with our trustee Dan and our ambassador Emily.Bombardier Blood is all about a man called Chris Bombardier who is on a mission to become the first pers...
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Season 7
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Episode 13
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32:55
Rare Disease Needs YOU! Want to know why? Listen to find out...
For this week's episode of the podcast, we need YOU to listen to find out why you should take part in a very important survey! Lucy and Emma will be discussing The Rare Disease Quality Statements Survey. The aim of the survey is to deve...
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Season 7
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Episode 12
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32:13
"Celine Dion spoke candidly and openly about Stiff Person Syndrome, but no-one picked up on that"
For this week's episode of the podcast, Helen our training programme manager takes over as host to speak with Mariette Kono, who is a medically retired occupational therapist who lives with Stiff Person Syndrome.Mariette talks all about...
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Season 7
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Episode 11
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31:27
What misconceptions are there about rare disease?
This week's episode of the podcast is a slightly shorter one, and this time, Lucy is the guest along with Dr Agatha, one of M4RD's ambassador's and a recent graduate from the University of Glasgow as well as being an academic foundation doctor ...
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Season 7
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Episode 10
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24:38
The shocking parallels between Flowers for Algernon and those living with rare diseases
For this week's episode of the podcast Lucy welcomes back our ambassador Daval Amratlal to review the book Flowers for Algernon by Daniel Keyes.Algernon is a laboratory mouse who has undergone surgery to increase his intelligence. The s...
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Season 7
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Episode 9
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32:09
“That's not a Black disease” - Malone Mukwende talks about stigma and exclusion
For this week's episode of the podcast, Lucy speaks with Malone Mukwende who is the founder of the platform BlackandBrownSkin. After his arrival at medical school, Malone became acutely ...
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Season 7
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Episode 8
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54:31
How guidelines have the potential to confuse people, and why!
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 di...
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Season 7
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Episode 7
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35:33
Mental health and victim blaming at work
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 co...
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Season 7
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Episode 7
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33:50
She said I had Becker Muscular Dystrophy - it was like a grenade going off
For this week’s episode of the podcast, Lucy speaks with our ambassador Dr Beth Meek and singer/songwriter David Hick who were both recently featured with M4RD in The British Medical Association’s magazine ‘The Doctor’.You can listen to ...
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Season 7
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Episode 6
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33:30
"I want the world to be kind to James" our thoughts on the new Colin Farrell interview
For this week's episode of the podcast, Lucy chats with Emma all about why Disneyland is more inclusive than society and Colin Farrell's recent interview where he talks about his son's rare condition Angelman Syndrome.Angelman Syndrome ...
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Season 7
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Episode 5
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40:28
'I am: Celine Dion' - how relatable (and unrelatable) is it?
Celine Dion was diagnosed with Stiff Person Syndrome in 2020. Lucy chats with our trustee Dan Jeffries and our amabassador Emily Livesey to discuss their thoughts on her new docufilm and discuss how relatable (and unrelatable) Celine Di...
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Season 7
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Episode 4
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41:34
Blind skiing and expressive art
For this week's episode of the podcast, Lucy speak's with Indy about skiing, art and disability. Indy is one the teachers at Stagecoach, who put on performing arts workshops for children.She lives with a condition called Oculofacialcard...
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Season 7
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Episode 3
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34:15
Will we need a Paralympic Games in the future?
For this week's episode of the podcast, Lucy speaks to two-time Paralympian and M4RD ambassador Kim Daybell all about his thoughts on the Olympics, Paralympics and Disability in Society.Kim has a rare disease called Poland Syndrome and ...
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Season 7
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Episode 2
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50:45
How do you grow as a rare disease charity?
Welcome to the new season of The Rare Disease Podcast for Medics!We're on season 7 now, how did that happen?!For the first in the new series, our CEO Lucy and comms manager Emma chat about M4RD's upcoming plans for our Rare Dise...
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Season 7
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Episode 1
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32:29
Psychosocial Care - Enhancing Medical Care to be Psychologically Informed
In anticipation of the 2024 ECRD conference in Brussels, our CEO Lucy McKay and CEO of RareMindsUK Kim Winter took part in this podcast to spark your curiosity and deepen your understanding of the topics that will be explored during their panel...
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35:06
Let's talk medical communications! with Emotive
For this week's podcast, our communications lead Emma Huskinson hosts a one-off episode with Emma Macleod and Charlotte Roe who work for our communications agency Emotive.They chat all about why they made the move to medical communicati...
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Season 6
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Episode 8
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32:36
Rare Disease 101 with Lucy McKay from the RSM 2024
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...
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Season 6
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Episode 7
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34:20
Think Ammonia with Metabolic Support UK
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 th...
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Season 6
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Episode 6
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59:46
M4RD x Big Bang Theory with our Patient Ambassador Daval
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 blisterin...
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Season 6
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Episode 5
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51:29
Words Matter with Jono Lancaster from The Unusual Suspects 2024
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 ...
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Season 6
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Episode 4
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20:07
My son with PTEN with Kelly Kearley from PTEN UKI
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,...
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Season 6
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Episode 3
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1:10:07
Think Rare, Think Genetics with Bonnie Jackson
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.<...
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Season 6
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Episode 2
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50:36
Baroness Nicola Blackwood on Politics and Patient Care
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 i...
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Season 6
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Episode 1
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52:33