Rare Voices podcast Want to hear from people living with ultra rare conditions? Listen to our podcast! Visit https://super-rare.org/podcast or search for Rare Voices Podcast. Listen Here Episode 1: Living with a rare condition 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 Here Episode 2: Dealing with parental anxiety For parents of those with rare bone marrow conditions in particular, life can be exceedingly stressful. Just over three quarters of parents surveyed for the Rare Voices report said they felt anxious at least some of the time. How can parents manage this anxiety and ensure they’re giving their child the support that they need? Guests: Stacy, parent of a child with Fanconi Anaemia Julia, parent of a child with Shwachman Diamond Syndrome Shah, parent of a child with Dyskeratosis congenita (DC) Listen Here Episode 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? Guests: Shabraz, living with Fanconi Anaemia Naomi, living with sickle cell anaemia Cameron, living with Shwachman Diamond Syndrome If you are living with aplastic anaemia or a connected condition, or supporting someone who is, you can find details of the psychological support we can offer here. Listen Here Episode 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 can you speak to friends about your condition? What can you do to combat loneliness when you’re struggling to leave the house? How are people with similar conditions finding each other? What can you do to manage your condition when you’re out? How do you recruit friends to help you if things take a turn? Guests: Virginia, living with PNH Shabraz, living with Fanconi Anaemia Claire, living with aplastic anaemia Listen Here Episode 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. How do we improve awareness of these conditions among healthcare professionals? How do we get doctors to listen to us? What specialist services are available? What do you do if you suspect you have a rare blood disorder but doctors aren’t seeing it? Guests: Stacy, parent of a child with Fanconi Anaemia Virginia, living with PNH Cameron, living with Shwachman Diamond Syndrome Listen Here Episode 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 and why it’s so important to educate people about these conditions and what it means for those living with them. Guests: Julia, parent of a child with Shwachman Diamond Syndrome Jovita, living with PNH Paula, living with with Dyskeratosis Congenita (DC) Listen Here Manage Cookie Preferences