The Rare Disease Podcast

De: Medics For Rare Disease
  • Resumen

  • 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

    © 2025 The Rare Disease Podcast
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Episodios
  • Light in the Silence: A review of the documentary 'It's not yet dark'
    May 8 2025

    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 chat about the documentary 'It's Not Yet Dark'.

    'It's Not Yet Dark' is about the story of Simon Fitzmaurice, a young filmmaker who becomes completely paralysed from Motor Neuron disease but goes on to direct an award-winning feature film through the use of his eyes.

    The documentary is available to watch on Apple TV and Amazon Prime.

    Views, ideas and opinions expressed in this podcast are personal to the individual and Medics4RareDiseases does not accept responsibility for those expressed by guests.

    M4RD receives funding from commercial companies which it works independently from. M4RD's Partners and Funders do not accept responsibility for any views expressed in this podcast.

    M4RD does not endorse any companies or products that it receives sponsorship from. For more information please see the show notes and www.m4rd.org/sponsors #DareToThinkRare

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    40 m
  • The GP with MG: Experiences as a Doctor with Myasthenia gravis with Dr Hannah Brew
    May 1 2025

    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 Brew who  is a Portfolio GP. Hannah speaks about all the many things she does that are hugely valuable to the NHS and health.

    Hannah also lives with Myasthenia gravis which is a chronic autoimmune disorder causing muscle weakness.

    Views, ideas and opinions expressed in this podcast are personal to the individual and Medics4RareDiseases does not accept responsibility for those expressed by guests.

    M4RD receives funding from commercial companies which it works independently from. M4RD's Partners and Funders do not accept responsibility for any views expressed in this podcast.

    M4RD does not endorse any companies or products that it receives sponsorship from. For more information please see the show notes and www.m4rd.org/sponsors #DareToThinkRare

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    53 m
  • I found out I was intersex as an adult - Special guest episode with Lexi
    Apr 24 2025

    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 has a condition that means she has three sex chromosomes (XXY) which causes many different health problems, in addition to variations of sexual characteristics. In this episode she shares her experiences of living with gender incongruence - a mismatch between a person's internal sense of gender and the sex they were assigned at birth. And how she felt when she "accidentally" find out she is in fact XXY.

    Please note that this episode was recorded before the UK Supreme Court ruling on the meaning of 'sex' in the Equality Act of 2010. We hope to speak to Lexi again later in the season to discuss her thoughts on this ruling.

    To find out more about the organisations mentioned in the podcast, please head to the links below. If you would like to leave comments please be polite and respectful to the lived experiences of the people featured in this episode.

    Interconnected UK

    Klinefelter's Syndrome Association

    Turner Syndrome Support Society

    Views, ideas and opinions expressed in this podcast are personal to the individual and Medics4RareDiseases does not accept responsibility for those expressed by guests.

    M4RD receives funding from commercial companies which it works independently from. M4RD's Partners and Funders do not accept responsibility for any views expressed in this podcast.

    M4RD does not endorse any companies or products that it receives sponsorship from. For more information please see the show notes and www.m4rd.org/sponsors #DareToThinkRare

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    45 m
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