{"store":{"baseInfo":{"podcastTitle":"Rare Voices Podcast","slug":"rare-voices","podcastDescription":"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. \n\nHow 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. \n\n----------------------------------\n\nMore info & support at: \n\ntheaat.org\npnhuk.org\ndcaction.org\ntogetherwecan.uk\nfanconihope.org\nsdsuk.org\nsuper-rare.org\n\nThe 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 Network (CAN). It is funded by The National Lottery Community Fund, with thanks to players of the National Lottery. It was produced by Hack Creative and presented by Mark Rowland.","podcastLogo":"https://pbcdn1.podbean.com/imglogo/image-logo/20721066/cover_with_header_3_93j7j.png","podcastShareLogo":"https://d2bwo9zemjwxh5.cloudfront.net/image-logo/20721066/cover_with_header_3_93j7j_1200x628.jpg?s=8076c2f218046fd7503a842f5d3c57dc&e=png","podcastUrl":"https://rare-voices.podbean.com","podcastCanSearched":true,"feedUrl":"https://feed.podbean.com/rare-voices/feed.xml","theme":"elegant","podcastDeepLink":"https://www.podbean.com/pw/pbblog-ipb5t-13c2daa","removePodbeanBranding":"no","brandingLogo":null,"timeZone":{"timeZoneId":30,"gmtAdjustment":"GMT+00:00","useDaylightTime":1,"value":0,"text":"(GMT+00:00) Greenwich Mean Time : Dublin, Edinburgh, Lisbon, London","daylightStartTime":"Last Sunday of March +1 Hours","daylightEndTime":"Last Sunday Of October +1 Hours","timezone":"Europe/London"},"podcastDownloads":null,"totalEpisodes":6,"showComments":true,"iOSAppDownloadLink":null,"customizeCssUrl":null,"androidAppDownloadLink":null,"showPostShare":true,"showLike":true,"author":"The Aplastic Anaemia Trust, PNH Support, DC Action, Fanconi Hope, SDS UK, and CAN.","enableEngagementStats":true,"shareEmbedLink":"https://admin5.podbean.com/embed.html?id=pbblog-ipb5t-13c2daa-playlist","language":"en","sensitivitySessionExpireTime":3600,"podcastApps":[{"name":"Apple Podcasts","link":"https://podcasts.apple.com/gb/podcast/rare-voices-podcast/id1815277382","image":"https://pbcdn1.podbean.com/fs1/site/images/admin5/apple-podcast.png","title":null},{"name":"YouTube","link":"https://www.youtube.com/playlist?list=PLCN2f6wEdWAayBiv1r7D42MFJ0e5-45j7","image":"https://pbcdn1.podbean.com/fs1/site/images/admin5/youtube_logo.png","title":null},{"name":"Podbean App","link":"https://podbeanapp.page.link/?link=https%3A%2F%2Frare-voices.podbean.com%3Faction%3DopenPodcast%26podcastId%3Dpbblog20721066%26podcastIdTag%3Dipb5t&dfl=https%3A%2F%2Frare-voices.podbean.com&utm_campaign=pb_web&utm_source=podbean_web&utm_medium=dlink&imv=670&amv=530&isi=973361050&ibi=com.podbean.app.podcast&ipbi=com.podbean.app.podcast&apn=com.podbean.app.podcast","image":"https://pbcdn1.podbean.com/fs1/site/images/admin5/podbean-app.png","title":null},{"name":"Spotify","link":"https://open.spotify.com/show/0NzrElWb7qAmpQiNSpf8ou","image":"https://pbcdn1.podbean.com/fs1/site/images/admin5/spotify.png","title":null},{"name":"Amazon Music","link":"https://music.amazon.com/podcasts/e68a5e75-bdda-41a0-99f3-4d3c3dc46662","image":"https://pbcdn1.podbean.com/fs1/site/images/admin5/AmazonMusic.png","title":null},{"name":"iHeartRadio","link":"https://iheart.com/podcast/276409256","image":"https://pbcdn1.podbean.com/fs1/site/images/admin5/iHeartRadio.png","title":null},{"name":"PlayerFM","link":"https://player.fm/series/3666517","image":"https://pbcdn1.podbean.com/fs1/site/images/admin5/PlayerFM.png","title":null},{"name":"Podchaser","link":"https://www.podchaser.com/podcasts/rare-voices-podcast-6100179","image":"https://pbcdn1.podbean.com/fs1/site/images/admin5/Podchaser.webp","title":null},{"name":"BoomPlay","link":"https://www.boomplaymusic.com/podcasts/132677","image":"https://pbcdn1.podbean.com/fs1/site/images/admin5/BoomPlay.png","title":null}],"components":{"base":[{"id":"MainStyle","val":"light"},{"id":"Font","val":"Geometric Humanist"},{"id":"SecondaryFont","val":"Geometric Humanist"},{"id":"PlayerColor","val":"#428200"},{"id":"PlayerStyle","val":"player1"},{"id":"PlayerWave","val":"show"},{"id":"Favicon","val":null},{"id":"CookiesNotice","val":"hide"},{"id":"CookiesNoticeContent","val":"

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What is it like living with a rare blood or bone marrow disorder? In the first episode of this series, we discuss what it’s like to live with a rare condition day-to-day.

Conditions mentioned in this episode: Sickle cell anemia, Dyskeratosis Congenita, Paroxysmal Nocturnal Haemoglobinuria

Content note: This episode discusses miscarriage and pregnancy loss.

1. Living with a rare condition

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