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Rare Voices Podcast

Rare Voices Podcast

By: The Aplastic Anaemia Trust PNH Support DC Action Fanconi Hope SDS UK and CAN.
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About this listen

 What’s it like living with a rare blood or bone marrow disorder? Or parenting a child who is? This brand new podcast invites people living with these conditions to share their perspectives and advice for those facing similar challenges. How do you carry on feeling positive when someone you know dies as a result of the same condition? How do you explain why your child can’t go to a party? How do you speak up at the hospital when you think doctors need to do something different? Stories of strength and real, practical advice for super rare people and families. ---------------------------------- More info & support at: theaat.org pnhuk.org dcaction.org togetherwecan.uk fanconihope.org sdsuk.org super-rare.org The Rare Voices podcast is a joint project between The Aplastic Anaemia Trust, PNH Support, DC Action (supporting people with Dyskeratosis Congenita and Telomere Biology Disorders), Fanconi Hope, SDS UK (supporting people with Shwachman Diamond Syndrome) and Congenital Anaemia Network (CAN). It is funded by The National Lottery Community Fund, with thanks to players of the National Lottery. It was produced by Hack Creative and presented by Mark Rowland.Copyright 2025 All rights reserved. Hygiene & Healthy Living Psychology Psychology & Mental Health
Episodes
  • 6. How do we raise awareness of rare conditions

    6. How do we raise awareness of rare conditions
    May 19 2025

    This final episode looks at the lack of public awareness about rare bone marrow conditions and the challenges in getting people to understand them. We highlight the work of the collective charities to raise awareness.

    Conditions mentioned in this episode: Fanconi Anaemia, Dyskeratosis Congenita, Paroxysmal Nocturnal Haemoglobinuria

    Further Reading:

    super-rare.org theaat.org.uk/emotional-wellbeing-support pnhuk.org dcaction.org sdsuk.org
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    18 mins
  • 5. Navigating the healthcare system

    5. Navigating the healthcare system
    May 17 2025

    When conditions are rare, even healthcare professionals fail to recognise them. This episode discusses some of the struggles that people living with rare blood disorders can experience when trying to get medical care.

    Conditions mentioned in this episode: Paroxysmal Nocturnal Haemoglobinuria, Shwachman Diamond Syndrome

    Further reading:

    fanconihope.org sdsuk.org pnhuk.org theaat.org.uk super-rare.org
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    15 mins
  • 4. How to find your tribe

    4. How to find your tribe
    May 15 2025

    Loneliness is rife among people living with rare blood disorders. But there’s a whole community of people out there who are willing to connect. How are people with similar conditions finding each other?

    Conditions mentioned in this episode: Fanconi anemia, Aplastic Anaemia, Paroxysmal Nocturnal Haemoglobinuria

    Further Reading:

    super-rare.org theaat.org.uk pnhuk.org fanconihope.org
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    17 mins
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