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.
Episodes
65 episodes
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
What is Colin Farrell scared of? and why Disneyland is more inclusive than society
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
Special Episode: Hope Russell-Winter from The Voice UK
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 Multip...
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Season 5
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Episode 10
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1:05:13
How a medical student saved my life and my experience of Addison's Disease with Corrinne Hepworth
For the last podcast episode of the season and the last episode Mel will be featuring on as a host - Mel spoke with Corrinne Hepworth who is an M4RD ambassador - who was also diagnosed with Addison's disease.Addison's Disease is a rare ...
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Season 5
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Episode 9
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45:34
What exactly is Newborn Screening?
For this year's episode of the podcast Lucy speaks with a panel at this years Rare Summit all about The NHS Newborn Screening Programme - what is it and how is it evolving?Joining Lucy is Dr David Elliman, the Clinical Advisor for the N...
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Season 5
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Episode 8
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39:55
The Rare Youth Monologues - USA Edition
For this week's episode of the podcast, we hear from Courtney, Evan and Jessie as they give their Rare Youth Monologues with Lucy. Hear their inspiring stories and listen afterwards to a great discussion about the process with our ...
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Season 5
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Episode 7
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54:27
What's it like working for a rare disease charity? with Rick Thompson
For this week's episode of the podcast, Lucy speaks with Rick Thompson who is the CEO of the charity Beacon for Rare Diseases.He was the charity's third member of staff until he was promoted in 2017 and has written articles, given talks...
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Season 5
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Episode 6
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1:03:42
MPS Hunter Syndrome with Daniella Vandepeer
For this week's episode of the podcast, we're joined by Daniella Vandepeer, who is a mother to Caleb who has a diagnosis of MPS II Hunter Syndrome. Daniella is also currently busy furthering her career and studying nursing and midw...
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30:15
ALK-Positive Lung Cancer and Me with Debra Montague
For this episode of the podcast, Melissa spoke with Debra Montague, founder of the ALK Positive UK charity.Deborah is also a survivor of ALK Positive lung cancer and spoke with Melissa about the misconceptions surrounding it and her exp...
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Season 5
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Episode 4
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45:32
Young-Onset Parkinson's - a laughing matter?
You gotta fight for your right to PARKY!Phil is an amateur stand-up comedian from Birmingham who was diagnosed with Young Onset Parkinson’s Disease at the age of 36. Phil shares the lighter and more ridiculous parts of his condition thr...
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Season 5
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Episode 3
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50:31
Melbourne to Manchester - a clinical trial story
Today's episode of the podcast is a special one as Lucy is joined by an old friend of hers, Xanthe Whittaker. Xanthe is a university lecturer and Mum to Jackson who passed away in May, 2014. They came into each other's lives when Lucy was...
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Season 5
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Episode 2
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52:04