Introducing the Rare Voices podcast! People living with ultra rare conditions related to the bone marrow discuss how it affects their lives and offer their advice to others facing similar diagnosis. We are proud to have Fanconi Anaemia represented by Stacy Perry and Shabz Akram. Listen Now! https://super-rare.org/podcast
What is it like living with a rare blood or bone marrow disorder? Episode one 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.
Other episodes explore how to deal with anxiety as parents of a child living with a serious rare condition, how to connect with others facing similar diagnosis, and how to navigate the healthcare system. All episodes are live now!
Listen now: https://super-rare.org/podcast
This podcast is a collaborative project between The Aplastic Anaemia Trust, DC Action, PNH Support, CAN Congenital Anaemia Network, Fanconi Hope, and SDS UK. It is funded by The National Lottery Community Fund – with thanks to players of The National Lottery.