PODCAST · health
Rare Voices Podcast
by The Aplastic Anaemia Trust, PNH Support, DC Action, Fanconi Hope, SDS UK, and CAN.
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.orgpnhuk.orgdcaction.orgtogetherwecan.ukfanconihope.orgsdsuk.orgsuper-rare.orgThe 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 N
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6. How do we raise awareness of rare conditions
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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5. Navigating the healthcare system
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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4. How to find your tribe
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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3. How do you find psychological support?
Around two-thirds of people living directly or indirectly with a rare bone marrow condition feel they need more psychological support. Why is it important, how does it help and what resources are available? Conditions mentioned in this episode: Sickle cell anemia, Fanconi Anaemia, Shwachman Diamond Syndrome Further Reading: super-rare.org theaat.org.uk fanconihope.org sdsuk.org togetherwecan.uk
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2. Dealing with parental anxiety
For parents of those with rare bone marrow conditions, life can be exceedingly stressful. How can you manage this anxiety and support their child well? Conditions mentioned in this episode: Fanconi Anaemia, Shwachman Diamond Syndrome, Dyskeratosis Congenita. Further reading: fanconihope.org sdsuk.org dcaction.org theaat.org.uk super-rare.org
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1. Living with a rare condition
What is it like living with a rare blood or bone marrow disorder? In the first episode of this series, we discuss what it’s like to live with a rare condition day-to-day. Conditions mentioned in this episode: Sickle cell anemia, Dyskeratosis Congenita, Paroxysmal Nocturnal Haemoglobinuria Content note: This episode discusses miscarriage and pregnancy loss. Further Reading: super-rare.org theaat.org.uk pnhuk.org dcaction.org togetherwecan.uk
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ABOUT THIS SHOW
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.orgpnhuk.orgdcaction.orgtogetherwecan.ukfanconihope.orgsdsuk.orgsuper-rare.orgThe 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 N
HOSTED BY
The Aplastic Anaemia Trust, PNH Support, DC Action, Fanconi Hope, SDS UK, and CAN.
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