The Rare Disease Podcast

Jan 31 2025 75 ep. 45 mins 7

The Rare Disease Podcast artwork

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

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How YOU can get involved with Rare Disease Day 2025!

Jan 31 2025 22 mins

Let us know what you think of this episode! We read every comment we receive.Before we jump in to a new season of the podcast, we have a special episode with Emma and Lucy which covers all the ways you can get involved with Rare Disease Day 2025!Every year for Rare Disease Day, Medics For Rare Disease run our own #ShowYourStripes campaign where you can raise awareness by putting on

Looking back, Moving Forward: The Medics for Rare Disease highlights of 2024

Dec 20 2024 17 mins

Let us know what you think of this episode! We read every comment we receive.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 all of our listeners. Our podcast has grown so much over this past yea

Why you should read 'Two for Joy' - the true story of one families journey to happiness with severely disabled twins

Dec 05 2024 58 mins

Let us know what you think of this episode! We read every comment we receive.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 desperate fight for life after being born four months prematurely. James

Bombardier Blood: The man with Haemophilia who climbed the seven summits!

Nov 28 2024 32 mins

Let us know what you think of this episode! We read every comment we receive.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 person with severe haemophilia to climb the Seven Summits, the highest moun

Rare Disease Needs YOU! Want to know why? Listen to find out...

Nov 22 2024 32 mins

Let us know what you think of this episode! We read every comment we receive.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 develop a set of quality statements for what good care looks like in rare d

"Celine Dion spoke candidly and openly about Stiff Person Syndrome, but no-one picked up on that"

Nov 14 2024 31 mins

Let us know what you think of this episode! We read every comment we receive.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 her experiences about being diagnosed from the perspective of someone

What misconceptions are there about rare disease?

Nov 07 2024 24 mins

Let us know what you think of this episode! We read every comment we receive.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 in Newcastle.They are both being interviewed by Y2 medical stud

The shocking parallels between Flowers for Algernon and those living with rare diseases

Oct 31 2024 32 mins

Let us know what you think of this episode! We read every comment we receive.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 story is told by a series of progress reports written by Charlie Gordon,

“That's not a Black disease” - Malone Mukwende talks about stigma and exclusion

Oct 24 2024 54 mins

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 Malone Mukwende who is the founder of the platform BlackandBrownSkin. After his arrival at medical school, Malone became acutely aware of the lack of clinical teaching provided about conditions as they appear on patients with darker skin. This lead h

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

Oct 17 2024 35 mins

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 e