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
  • New look, New Era: NHS England moves and rare disease moments
    Apr 17 2025

    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're now on Season 8!

    For the first episode of the new season, Lucy covers our new branding, how Rare Disease Day went for the Medics for Rare Disease team and the recent news about NHS England.

    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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    47 m
  • How YOU can get involved with Rare Disease Day 2025!
    Jan 31 2025

    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 your best pair of stripey socks and sharing them on social media tagging @MedicsForRare with the hashtag #ShowYourStripes.

    To find all the campaign materials for Rare Disease Day 2025, just head to the link below where you will find everything you need to get going!

    https://www.m4rd.org/rarediseaseday2025/


    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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    22 m
  • Looking back, Moving Forward: The Medics for Rare Disease highlights of 2024
    Dec 20 2024

    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 year and it's only because of you! From everyone at M4RD, we wish you a very Merry Christmas and a Happy New Year!

    We will be back for a few exclusive episodes in January 2025, with our new season officially starting in February 2025.

    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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    17 m
  • Why you should read 'Two for Joy' - the true story of one families journey to happiness with severely disabled twins
    Dec 5 2024

    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 Melville-Ross, their father, tells of how the twins not only survived - despite being given the last rites as babies - but also thrived.

    If you would like to read the book you can do so here https://www.awesomebooks.com/book/9781786060105/two-for-joy/used?gad_source=1&gbraid=0AAAAADocATC_xLpb1kozsBtATtfdVV_kN&gclid=CjwKCAiAmMC6BhA6EiwAdN5iLb0OIxe4YI-6LcGdqksxE86nl1RGJmynVelGqXqwD9GgZ2MX4qJDBRoCcrMQAvD_BwE

    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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    58 m
  • Bombardier Blood: The man with Haemophilia who climbed the seven summits!
    Nov 28 2024

    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 mountain on each continent. He has completed five of the climbs already, but the next faces the big one: Everest.

    If you would like to watch the film, you can watch on Amazon or for free on YouTube.

    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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    33 m
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