What is it like living with a rare blood or bone marrow disorder? This episode sets the scene with the series by discussing what it’s like to live with a rare condition day-to-day, from home life, work, going out, dealing with the healthcare system and more. 

Guests: 

  • Shah, parent of a child with Dyskeratosis congenita (DC)
  • Jovita, living with PNH
  • Naomi, living with sickle cell anaemia

Listen now:

You can also search for "Rare Voices Podcast" to listen on your favourite podcast app.

Want to hear from people living with ultra rare bone marrow conditions? Listen to our podcast!   

Listen to more podcast episodes  Find more AA voices


AA voices

AA voices is a collection of blogs in which people affected by aplastic anaemia or related conditions share the stories they feel are important, in their own words. If you would like to tell your story here, please get in touch with Ellie, our Head of Comms, by emailing [email protected].