The Rare Disease Podcast

Medics4RareDiseases
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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

  1. -13 H

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

    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 diseases.The survey is open to anyone who has a rare disease, is a family member or carer of someone with a rare d...

    32 min

  2. 14 NOV.

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

    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 with a healthcare background.Views, ideas and opinions expressed in this podcast are personal to the individual a...

    31 min

  3. 7 NOV.

    What misconceptions are there about rare disease?

    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 students from The University of Glasgow all about how they both got involved in their work and how people can help ra...

    25 min

  4. 31 OCT.

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

    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, the first human subject for the surgery, and it touches on ethical and moral themes such as the treatment of peo...

    32 min

  5. 24 OCT.

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

    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 him to write the handbook 'Mind the Gap', a clinical handbook of signs and symptoms in Black and Brown skin.Listen...

    55 min

  6. 17 OCT.

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

    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 experience.Lucy and Grace talk through the NICE (National Institute of Clinical Excellence) guidelines and discuss...

    36 min

  7. 10 OCT.

    Mental health and victim blaming at work

    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 Health Awareness Day, our guest is Kym Winter, the CEO from Rareminds.Rareminds is the first specialist, non profit, rare disease counselling and psychotherapy service in the UK (and possibly globally). The team has been providing online counselling and wellbeing services for rare disease charities since 2014.Kym and Lucy chat about mental health and vic...

    34 min

  8. 3 OCT.

    She said I had Becker Muscular Dystrophy - it was like a grenade going off

    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 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 David’s track ‘The Light’ featuring his friend Jo Logue, who also has Becker MD, at the end of the podcast. Or to hear more from David, search ‘David & the Devil’ on Spotify.Read ...

    34 min
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Bande-annonce

Notes et avis

À propos

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

Informations

  • Création
    Medics4RareDiseases
  • Années d’activité
    2021 - 2024
  • Épisodes
    71
  • Classification
    Tous publics
  • Copyright
    © 2024 The Rare Disease Podcast
  • Site web de l’émission
    The Rare Disease Podcast

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