{"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":"

Cookies Notice

This website uses cookies to improve your experience while you navigate through the website. By using our website you agree to our use of cookies.

"}],"home-header":[{"id":"HomeHeaderTextColor","val":"#000000"},{"id":"HomeHeaderBackgroundColor","val":"#ffffff"}],"page-header":[{"id":"PageHeaderTextColor","val":"#ffffff"},{"id":"PageHeaderBackgroundColor","val":"#868686"}],"episode-list":[{"id":"EpisodeListType","val":"grid"},{"id":"EpisodesPerPage","val":10},{"id":"EpisodeStats","val":"show"}],"navigation":[{"id":"NavigationFontColor","val":"#000000"},{"id":"NavigationBackgroundColor","val":"#e9e9e9"},{"id":"NavigationSearch","val":"show"},{"id":"NavigationLinks","val":[{"id":"Home","type":"Link","value":"/","text":"Home","subitems":[]},{"id":"Subscribe","type":"Link","value":"https://www.podbean.com/site/podcatcher/index/blog/eOrl5YSVzixV","text":"Subscribe","subitems":[]},{"id":"Profile","type":"Link","value":"https://www.podbean.com/user-3mbMaDSMoSJx","text":"Profile","subitems":[]}]}],"footer":[{"id":"FooterType","val":"Footer2"},{"id":"FooterFontColor","val":"#ffffff"},{"id":"FooterBackgroundColor","val":"#000000"},{"id":"FooterCopyright","val":"Copyright 2025 All rights reserved."},{"id":"SocialMediaLinks","val":{"facebook_username":"","twitter_username":"","instagram_username":"","youtube_username":"","linkedin_username":""}}],"customize-container1":[],"customize-container2":[]},"allLinks":[],"mainStylesDefaultSettings":null,"defaultCustomizeComponents":null,"scripts":[],"metas":null,"appConfig":{"package":"com.podbean.app.podcast","app_store_id":973361050,"app_name":"Podbean","scheme":"podbean"},"customizeCss":null,"canEditCss":null,"enableJsCodeInCustomizeContent":false,"enabledIframeCodeInCustomizeContent":true,"sectionMaxCount":10,"enableEditorLink":true,"enableEditCookiesNotice":true,"siteRedirectToFeed":false,"podcatcherRssUrl":null,"showFeed":true,"showTopBar":true,"enableWebSiteLike":true,"organizationName":null,"organizationPageLink":null},"backToListUrl":"/","tinymceLoaded":false,"listEpisodes":[],"userLikedEpisodes":[],"userLikeCheckedEpisodes":[],"topBarIframeLoaded":false,"listTotalCount":0,"listTotalPage":0,"listPage":0,"listType":"all","listValue":"","listName":"","pageLoading":false,"apiBaseUrl":"https://rare-voices.podbean.com","apiCommonParams":{"t":"6830e8ca","clientSignature":"b46eb866054b24ac450805ff11c52a66","u":null,"customizing":null},"apiCommonHeaders":{},"comments":[],"commentsTotalCount":0,"commentsTotalPage":0,"commentsPage":1,"commentEpisodeId":"pb25892153-5swfr","episode":{"id":"pb25892153","idTag":"5swfr","title":"5. Navigating the healthcare system","logo":"https://pbcdn1.podbean.com/imglogo/ep-logo/pbblog20721066/Episode_5_4_99tuj_300x300.png","shareLogo":"https://d2bwo9zemjwxh5.cloudfront.net/ep-logo/pbblog20721066/Episode_5_4_99tuj_1200x628.jpg?s=56d15ba131c2c8eb08790b09f6a2a435&e=png","largeLogo":"https://pbcdn1.podbean.com/imglogo/ep-logo/pbblog20721066/Episode_5_4_99tuj.png","previewContent":null,"content":"

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.

Conditions mentioned in this episode: Paroxysmal Nocturnal Haemoglobinuria, Shwachman Diamond Syndrome

5. Navigating the healthcare system

Comments (0)