Rare Voices Podcast

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