Rarely Heard is a rare disease podcast series that exists to share the stories, experiences, knowledge, insights and voices of those living with some of the world's rarest diseases as these should not be Rarely Heard, but widely shared.
Publishes | Weekly | Episodes | 20 | Founded | 2 years ago |
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Categories | Mental HealthHealth & Fitness |
Alkaptonuria or AKU is an ultra rare genetic disease that can cause significant damage to the bones, cartilage and tissues of those affected. At the National Alkaptonuria Centre (NAC) in Liverpool, patients are able to access Nitisinone to treat the... more
Kostiantyn was forced to leave his home in Kyiv, Ukraine when bombing started on February 24th 2022. He lives with the ultra rare condition Alkaptonuria which can cause significant damage to the bones, cartilage and tissues of those affected. more
Stephanie is an accredited psychotherapist working with Rareminds and has been a specialist cancer counsellor in the NHS for over 7 years.In addition to her clinical practice, Stephanie conducts research and provides training and consultancy on the e... more
Shelley is mother to Noah, a teenager who was diagnosed with an inoperable brain tumour in June 2021. Nicole was diagnosed with NF1 as a toddler and is the inspiration behind the charity, Childhood Tumour Trust. more
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Interesting stories of resilience. Rarely Heard presents people facing rare disease challenges. It’s so helpful to hear their first hand accounts and finding supportive communities along the way. Really important. Thank you!
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Rarely Heard launched 2 years ago and published 20 episodes to date. You can find more information about this podcast including rankings, audience demographics and engagement in our podcast database.
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