The Rare Disease Podcast
Episodes
Not Just Words: Dr. Lisa Kaufman on Core Communication from the RSM
14 Aug 2025
Contributed by Lukas
Let us know what you think of this episode! We read every comment we receive.In this episode, we hear from the brilliant Dr. Lisa Kaufman, a Consultan...
Ambassadors for a Reason: What Medics for Rare Disease Gets Right
07 Aug 2025
Contributed by Lukas
Let us know what you think of this episode! We read every comment we receive.For today's episode of the podcast Lucy speaks with Charlotte Chapma...
Is the NHS Listening to Its Young Patients?
31 Jul 2025
Contributed by Lukas
Let us know what you think of this episode! We read every comment we receive.For today's episode of the podcast, Lucy chats to Beth and Katie abo...
Warning Signs You’re Burning Out! (And What to Do Next) with Dr Claire Ashley
24 Jul 2025
Contributed by Lukas
Let us know what you think of this episode! We read every comment we receive.In this episode, Lucy sits down with Dr Claire Ashley, author of The Burn...
Why Is Being Rare Still a Struggle for Justice?
17 Jul 2025
Contributed by Lukas
Let us know what you think of this episode! We read every comment we receive.For this episode of the podcast Lucy speaks with our new Research Project...
Hidden Clues at Birth: Are PAGS the Missing Link?
10 Jul 2025
Contributed by Lukas
Let us know what you think of this episode! We read every comment we receive.For this week's episode of the podcast, Lucy talks all about the Rol...
We Thought It Was Just Seizures
03 Jul 2025
Contributed by Lukas
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 Abbie and her ...
Why excellent care shouldn’t depend on how common a condition is
26 Jun 2025
Contributed by Lukas
Let us know what you think of this episode! We read every comment we receive.For this episode of The Rare Disease Podcast for Medics, we're shari...
What To Do When A Child Unexpectedly Dies
19 Jun 2025
Contributed by Lukas
Let us know what you think of this episode! We read every comment we receive.*Please be aware that this episode contains conversations about child los...
The Organ My Baby Needs Is Inside Me
12 Jun 2025
Contributed by Lukas
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 to Elle Daniel w...
Genomics in Primary Care: Why Your Role Matters More Than Ever!
05 Jun 2025
Contributed by Lukas
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 Isobel, Philand...
Can I Get An Amen?! How Drag Race Quotes Became my Mantra
29 May 2025
Contributed by Lukas
Let us know what you think of this episode! We read every comment we receive.For this week's episode of the podcast Lucy shares how iconic RuPaul...
Why using the word "cure" isn't the way forward
22 May 2025
Contributed by Lukas
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 one of our new...
How can the NHS better serve you?
15 May 2025
Contributed by Lukas
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 our new truste...
What does it mean to live fully, even when your body fails you? A review of 'It's not yet dark'
08 May 2025
Contributed by Lukas
Let us know what you think of this episode! We read every comment we receive.For this week's episode of the podcast, Lucy has Emily back on to ch...
Experiences as a GP with Myasthenia Gravis with Dr Hannah Brew
01 May 2025
Contributed by Lukas
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 Dr Hannah B...
I found out I was intersex as an adult - Special guest episode with Lexi
24 Apr 2025
Contributed by Lukas
Let us know what you think of this episode! We read every comment we receive.Lexi Breen found out that she was intersex when she was an adult. Lexi ha...
New look, New Era: NHS England moves and rare disease moments
17 Apr 2025
Contributed by Lukas
Let us know what you think of this episode! We read every comment we receive.Welcome back to the Rare Disease Podcast! We can't believe we'r...
How YOU can get involved with Rare Disease Day 2025!
31 Jan 2025
Contributed by Lukas
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 episo...
Looking back, Moving Forward: The Medics for Rare Disease highlights of 2024
20 Dec 2024
Contributed by Lukas
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 o...
Why you should read 'Two for Joy' - the true story of one families journey to happiness with severely disabled twins
05 Dec 2024
Contributed by Lukas
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 Madd...
Bombardier Blood: The man with Haemophilia who climbed the seven summits!
28 Nov 2024
Contributed by Lukas
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...
Rare Disease Needs YOU! Want to know why? Listen to find out...
22 Nov 2024
Contributed by Lukas
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 fin...
"Celine Dion spoke candidly and openly about Stiff Person Syndrome, but no-one picked up on that"
14 Nov 2024
Contributed by Lukas
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...
What misconceptions are there about rare disease?
07 Nov 2024
Contributed by Lukas
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 th...
The shocking parallels between Flowers for Algernon and those living with rare diseases
31 Oct 2024
Contributed by Lukas
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 ambass...
“That's not a Black disease” - Malone Mukwende talks about stigma and exclusion
24 Oct 2024
Contributed by Lukas
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 Mukw...
How guidelines have the potential to confuse people, and why!
17 Oct 2024
Contributed by Lukas
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 Knigh...
Mental health and victim blaming at work
10 Oct 2024
Contributed by Lukas
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 Heal...
She said I had Becker Muscular Dystrophy - it was like a grenade going off
03 Oct 2024
Contributed by Lukas
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 our ambassador...
"I want the world to be kind to James" our thoughts on the new Colin Farrell interview
26 Sep 2024
Contributed by Lukas
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 Emma all abo...
'I am: Celine Dion' - how relatable (and unrelatable) is it?
20 Sep 2024
Contributed by Lukas
Let us know what you think of this episode! We read every comment we receive.Celine Dion was diagnosed with Stiff Person Syndrome in 2020. Lucy chats ...
Blind skiing and expressive art
12 Sep 2024
Contributed by Lukas
Let us know what you think of this episode! We read every comment we receive.For this week's episode of the podcast, Lucy speak's with Indy ...
Will we need a Paralympic Games in the future?
05 Sep 2024
Contributed by Lukas
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 to two-time Para...
How do you grow as a rare disease charity?
29 Aug 2024
Contributed by Lukas
Let us know what you think of this episode! We read every comment we receive.Welcome to the new season of The Rare Disease Podcast for Medics!We'...
Psychosocial Care - Enhancing Medical Care to be Psychologically Informed
13 May 2024
Contributed by Lukas
Let us know what you think of this episode! We read every comment we receive.In anticipation of the 2024 ECRD conference in Brussels, our CEO Lucy McK...
Let's talk medical communications! with Emotive
25 Apr 2024
Contributed by Lukas
Let us know what you think of this episode! We read every comment we receive.For this week's podcast, our communications lead Emma Huskinson host...
Rare Disease 101 with Lucy McKay from the RSM 2024
18 Apr 2024
Contributed by Lukas
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 globa...
Think Ammonia with Metabolic Support UK
11 Apr 2024
Contributed by Lukas
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 w...
M4RD x Big Bang Theory with our Patient Ambassador Daval
04 Apr 2024
Contributed by Lukas
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 Amra...
Words Matter with Jono Lancaster from The Unusual Suspects 2024
28 Mar 2024
Contributed by Lukas
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 Unusua...
My son with PTEN with Kelly Kearley from PTEN UKI
21 Mar 2024
Contributed by Lukas
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 Kearle...
Think Rare, Think Genetics with Bonnie Jackson
14 Mar 2024
Contributed by Lukas
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 Jack...
Baroness Nicola Blackwood on Politics and Patient Care
07 Mar 2024
Contributed by Lukas
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 Medic...
Special Episode: Hope Russell-Winter from The Voice UK
26 Jan 2024
Contributed by Lukas
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 o...
How a medical student saved my life and my experience of Addison's Disease with Corrinne Hepworth
09 Nov 2023
Contributed by Lukas
Let us know what you think of this episode! We read every comment we receive.For the last podcast episode of the season and the last episode Mel will ...
What exactly is Newborn Screening?
30 Oct 2023
Contributed by Lukas
Let us know what you think of this episode! We read every comment we receive.For this year's episode of the podcast Lucy speaks with a panel at t...
The Rare Youth Monologues - USA Edition
25 Oct 2023
Contributed by Lukas
Let us know what you think of this episode! We read every comment we receive.For this week's episode of the podcast, we hear from Courtney, Evan ...
What's it like working for a rare disease charity? with Rick Thompson
11 Oct 2023
Contributed by Lukas
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 Rick Thomps...
MPS Hunter Syndrome with Daniella Vandepeer
05 Oct 2023
Contributed by Lukas
Let us know what you think of this episode! We read every comment we receive.For this week's episode of the podcast, we're joined by Daniell...
ALK-Positive Lung Cancer and Me with Debra Montague
28 Sep 2023
Contributed by Lukas
Let us know what you think of this episode! We read every comment we receive.For this episode of the podcast, Melissa spoke with Debra Montague, found...
Young-Onset Parkinson's - a laughing matter?
21 Sep 2023
Contributed by Lukas
Let us know what you think of this episode! We read every comment we receive.You gotta fight for your right to PARKY!Phil is an amateur stand-up comed...
Melbourne to Manchester - a clinical trial story
14 Sep 2023
Contributed by Lukas
Let us know what you think of this episode! We read every comment we receive. Today's episode of the podcast is a special one as Lucy is joined ...
In the shoes of a Clinical Nurse Specialist with Tanya Gill
07 Sep 2023
Contributed by Lukas
Let us know what you think of this episode! We read every comment we receive.For this week's episode Lucy is speaking with Tanya Gill, who has ju...
Rareminds – Let's talk about mental health with Kym Winter
04 May 2023
Contributed by Lukas
Let us know what you think of this episode! We read every comment we receive.Melissa is joined by Kym Winters, the founder of charity organisation Rar...
Diamond-Blackfan Anemia with Angela Cornwall
28 Apr 2023
Contributed by Lukas
Let us know what you think of this episode! We read every comment we receive.For this week's podcast, Melissa speaks with Angela Cornwall who is ...
The importance of research in verbal dyspraxia care with Pam Slater
20 Apr 2023
Contributed by Lukas
Let us know what you think of this episode! We read every comment we receive.For our next guest on the podcast, Melissa speaks to Pam Slater who is a ...
Facial Differences and Finding Self-Love with Jono Lancaster
13 Apr 2023
Contributed by Lukas
Let us know what you think of this episode! We read every comment we receive.For this week's guest, Lucy interviews Jono Lancaster, who is an aut...
My Journey with Superficial Siderosis
11 Apr 2023
Contributed by Lukas
Let us know what you think of this episode! We read every comment we receive.For this week's episode of the podcast Lucy talks to Deborah Hatch w...
M4RD Returns to Barts for Together Caring for Rare Disease
30 Mar 2023
Contributed by Lukas
Let us know what you think of this episode! We read every comment we receive.A few months ago, Medics4RareDiseases partnered with Medscape Education...
The Rare Youth Monalogues at RareFest 2022
23 Mar 2023
Contributed by Lukas
Let us know what you think of this episode! We read every comment we receive.During Rare Fest 2022, Chelsea Wong, Katie Callaghan and Eddie Bartlett, ...
Living with an Undiagnosed Condition with Tilly Rose
16 Mar 2023
Contributed by Lukas
Let us know what you think of this episode! We read every comment we receive.Our first guest for Season 4 of The Rare Disease Podcast for Medics is Ti...
M4RD Beyond Borders – Rare Disease Awareness in Zimbabwe
20 Dec 2022
Contributed by Lukas
Let us know what you think of this episode! We read every comment we receive.In this episode, Zimbabwean Medical Students dive deep into diseases that...
Not your usual Dermatologist - a DM with Dr Barlow
15 Dec 2022
Contributed by Lukas
Let us know what you think of this episode! We read every comment we receive.Lucy has a deep and meaningful with Dr Rich Barlow, Dermatology Registrar...
TAPS Twins - The patient the placenta and the passion for rare
05 Dec 2022
Contributed by Lukas
Let us know what you think of this episode! We read every comment we receive.This week Melissa speaks to Stephanie Ernst from the organization Taps Su...
Give Blood Spread Love (Sickle Cell Part 2)
28 Nov 2022
Contributed by Lukas
Let us know what you think of this episode! We read every comment we receive.The second part of Lucy's interview with columnist and advocate, Dun...
A brain tumour that isn’t a brain tumour
24 Nov 2022
Contributed by Lukas
Let us know what you think of this episode! We read every comment we receive.Melissa speaks with Ailsa Crowe, a content producer at Cavernoma Alliance...
Huntington's In Mind
17 Nov 2022
Contributed by Lukas
Let us know what you think of this episode! We read every comment we receive.Lucy speaks to Professor Ed Wild, Consultant Neurologist at Queen's ...
Listening to the Sickle Cell community Part 1
03 Nov 2022
Contributed by Lukas
Let us know what you think of this episode! We read every comment we receive.Dunstan Nicol-Wilson joins Lucy to discuss all things sickle cell and man...
Embracing uncertainty when expecting a baby with a genetic condition
27 Oct 2022
Contributed by Lukas
Let us know what you think of this episode! We read every comment we receive.**** Trigger warning: Baby loss *****Melissa is joined by Sonia Sankoli f...
Dr Grace, brother Eddie, Addison's Disease and ED
20 Oct 2022
Contributed by Lukas
Let us know what you think of this episode! We read every comment we receive.Eddie was diagnosed with Addison's Disease during the pandemic, whil...
Medics in research, advocacy and winning prizes (Student Voice Prize 2022) ft Phil from Beacon and Meagan from CureGRIN
13 Oct 2022
Contributed by Lukas
Let us know what you think of this episode! We read every comment we receive.Guest host alert! Phil from Beacon joins Lucy to discuss The Student Voic...
Episode 0: What's coming up in season 3?
06 Oct 2022
Contributed by Lukas
Let us know what you think of this episode! We read every comment we receive.Lucy introduces the newest season of The Rare Disease Podcast 4 Medics wi...
Not just hypermobility
16 May 2022
Contributed by Lukas
Let us know what you think of this episode! We read every comment we receive.Vascular Ehlers Danlos Syndrome (Vascular EDS/VEDS) is just one of 13 sub...
Clinical Trials and Early Access Programmes with Bionical Emas
12 May 2022
Contributed by Lukas
Let us know what you think of this episode! We read every comment we receive.This episode is brought to you by Bionical Emas and M4RD. Naomi from Bion...
What is a genetic counsellor? And some special guests!
05 May 2022
Contributed by Lukas
Let us know what you think of this episode! We read every comment we receive.Lucy and Melissa record live from emotive agency offices in London! Joine...
Paramedic to patient
28 Apr 2022
Contributed by Lukas
Let us know what you think of this episode! We read every comment we receive.Melissa from M4RD interviews Marie who was a healthy and active paramedic...
The Unusual Suspects Live Recording Part 2
21 Apr 2022
Contributed by Lukas
Let us know what you think of this episode! We read every comment we receive.This is Part 2 of a live recording of The Unusual Suspects: Rare disease ...
The Unusual Suspects Live Recording Part 1
16 Apr 2022
Contributed by Lukas
Let us know what you think of this episode! We read every comment we receive.This is Part 1 of a live recording of The Unusual Suspects: Rare disease ...
Lifelines in Leukodystrophy - a supportive GP and peer support
07 Apr 2022
Contributed by Lukas
Let us know what you think of this episode! We read every comment we receive.Aged six Alexander developed a squint and hearing loss which didn't ...
Assumptions, amputations and coordinated care
31 Mar 2022
Contributed by Lukas
Let us know what you think of this episode! We read every comment we receive.Lucy is joined by Helena Baker who was born with a congenital limb defect...
Not your usual diabetes
24 Mar 2022
Contributed by Lukas
Let us know what you think of this episode! We read every comment we receive.Do you know what DIDMOAD stands for? Get your medical dictionary ready......
Welcome back!
17 Mar 2022
Contributed by Lukas
Let us know what you think of this episode! We read every comment we receive.Lucy welcomes you back to The Rare Disease Podcast 4 Medics for season 2!...
Episode 9: The Miller family on XP and Xmas (including a quiz!)
16 Dec 2021
Contributed by Lukas
Let us know what you think of this episode! We read every comment we receive.Eddison is almost 11 and lives with a rare genetics disorder called Xerod...
Episode 8: Dr Sondra Butterworth on Inclusivity
09 Dec 2021
Contributed by Lukas
Let us know what you think of this episode! We read every comment we receive.Dr Sondra Butterworth is from a rare disease family, a carrier of a rare ...
Episode 7: Top tips for rare disease in GP
02 Dec 2021
Contributed by Lukas
Let us know what you think of this episode! We read every comment we receive.Lucy takes you through her top 11 tips for suspecting and managing rare d...
Episode 6: Dr Shanali on identity
25 Nov 2021
Contributed by Lukas
Let us know what you think of this episode! We read every comment we receive.Dr Shanali Perera is a contemporary artist, educator, writer and retired ...
Episode 5: Diagnosed during an OSCE
18 Nov 2021
Contributed by Lukas
Let us know what you think of this episode! We read every comment we receive.Dan Jeffries was born with a rare condition called Wyburn-Mason syndrome ...
Episode 4: Growing up with an undiagnosed condition
11 Nov 2021
Contributed by Lukas
Let us know what you think of this episode! We read every comment we receive.Sarah Lippett spent eleven years suffering with symptoms from an unknown ...
Episode 3: Doctors are patients too
04 Nov 2021
Contributed by Lukas
Let us know what you think of this episode! We read every comment we receive.When Dr Genevieve noticed some problems with her grip and speech she put ...
Episode 2: The Student Voice Prize 2021
28 Oct 2021
Contributed by Lukas
Let us know what you think of this episode! We read every comment we receive.The Student Voice Prize is an annual, international essay competition tha...
Episode 1: Not your usual heart attack
22 Oct 2021
Contributed by Lukas
Let us know what you think of this episode! We read every comment we receive.Today we will be exploring how people with classic heart attack symptoms ...
Episode 0: An Introduction to The Rare Disease Podcast 4 Medics
21 Oct 2021
Contributed by Lukas
Let us know what you think of this episode! We read every comment we receive.Dr Lucy McKay, CEO of Medics4RareDisease, provides some background into t...