休息了兩個月,今集請到脊髓肌肉萎縮症的患者吉吉的家長Wenus(吉吉媽) 及 Brian (吉吉爸)上來分享他們的故事。
http://www.facebook.com/rarefriendhk2017 (https://www.facebook.com/RarefriendHK2017)
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21 Sept 2022
You've Got a Rare Friend in Me - 罕見病群體義工服務隊 Rare GoGo
今期You've Got a Rare Friend in Me,請來由香港中文大學學生組成之罕見病群體義工服務隊 Rare GoGo的成員Chloe 及Jason 上來分享他們的工作。
Facebook Page: https://www.facebook.com/RarefriendHK2017
Rare GoGo罕見病群體學生服務隊:
https://www.facebook.com/Rare-GoGo%E7%BD%95%E8%A6%8B%E7%97%85%E7%BE%A4%E9%AB%94%E5%AD%B8%E7%94%9F%E6%9C%8D%E5%8B%99%E9%9A%8A-107439051012054/
https://www.instagram.com/raregogo.raredisease/
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24 Aug 2022
You've Got a Rare Friend in Me - 妥瑞症
You've Got a Rare Friend in Me 第四回請到妥瑞症患者 Brian 上來分享他的故事。
Facebook: https://www.facebook.com/RarefriendHK2017 (https://www.facebook.com/RarefriendHK2017)
留言告訴我你對這一集的想法: https://open.firstory.me/user/cl5p4wdq602l1010jgg2beo8k/comments (https://open.firstory.me/user/cl5p4wdq602l1010jgg2beo8k/comments)
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27 Jul 2022
You've Got a Rare Friend in Me - 天使綜合症 2
You've Got a Rare Friends in Me 第3回的第2節,繼續請來天使綜合症家庭 - 印印一家分享他們的故事。
Facebook: https://www.facebook.com/RarefriendHK2017
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18 Jul 2022
You've Got a Rare Friend in Me - 天使綜合症
You've got a Rare Friends in Me 第3回移師至Podcast 跟大家見面。今次請來Rare Friends 好朋友,印印一家上來跟我們分享他們的生活。
留言告訴我你對這一集的想法: https://open.firstory.me/user/cl5p4wdq602l1010jgg2beo8k/comments (https://open.firstory.me/user/cl5p4wdq602l1010jgg2beo8k/comments)
Facebook: https://www.facebook.com/RarefriendHK2017/
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