
The Rare Disease Podcast
3.5 million people in the UK live with a rare disease, so while each disease is individually rare, together rare diseases are common. Hear interviews with patients, clinicians, advocates, students and researchers focusing on rare disease in clinical medicine.
This podcast is brought to you by Medics for Rare Disease. Podcast distributors create their own transcripts and M4RD doesn’t take responsibility for them
Podcasting since 2021 • 89 episodes
The Rare Disease Podcast
Latest Episodes
Why Is Being Rare Still a Struggle for Justice?
For this episode of the podcast Lucy speaks with our new Research Project Manager Megan all about the RDI Lancet Commission on rare disease.
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Season 8
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Episode 14
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52:08

Hidden Clues at Birth: Are PAGS the Missing Link?
For this week's episode of the podcast, Lucy talks all about the Role of PAG's in New Born Screening which includes a talk that includes all of the ways that patient advocacy groups have been involved in the UK and globally.
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Season 8
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Episode 13
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49:44

We Thought It Was Just Seizures
For this week's episode of the podcast, Lucy chats to Abbie and her Father Steve.Whilst at primary school, Abbie was diagnosed with a very rare brain tumour during the COVID pandemic. Abbie shares her experiences along with Steve about h...
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Season 8
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Episode 12
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45:52

Why excellent care shouldn’t depend on how common a condition is
For this episode of The Rare Disease Podcast for Medics, we're sharing a powerful presentation delivered by Lucy at the SOFT UK conference. Lucy introduces the work of Medics for Rare Disease and explores how healthcare professionals can make a...
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Season 8
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Episode 11
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36:28

What To Do When A Child Unexpectedly Dies
*Please be aware that this episode contains conversations about child loss.*For this week's episode of the podcast, Lucy chats with Nikki Speed from SUDC UK. SUDC UK are a national charity for Sudden Unexplained Death in Chil...
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Season 8
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Episode 10
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46:28
