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      <title>結節性硬化症協會的10年 by Maggie LO Shuk-man</title>
      <link>https://padlet.com/maggielo2/tynxj5dnj2ajbok1</link>
      <description></description>
      <language>en-us</language>
      <pubDate>2022-03-17 17:17:06 UTC</pubDate>
      <lastBuildDate>2026-02-22 01:48:35 UTC</lastBuildDate>
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         <title>2015成立</title>
         <author>maggielo2</author>
         <link>https://padlet.com/maggielo2/tynxj5dnj2ajbok1/wish/2100504901</link>
         <description><![CDATA[<div><strong><br>我們的使命<br></strong><br></div><div>期望加強患者、家屬及醫護人員的溝通,支援患者和家屬,使患者得到適當的治療,以及增加公眾對這病症的認識」<br><br>目標 :<br>- 團結患者和家屬，互相支持；<br>- 協助家屬提升照顧技巧，照料患病家人，促進結節性硬化症患者的健康成長;<br>- 加強病人及家屬與醫護人員之間的溝通，使患者得到適當治療；<br>- 提升本地結節性硬化症的醫療及護理水平；<br>- 為結節性硬化症患者爭取合理的醫療服務；<br>- 透過各項活動，增加公眾對結節性硬化症的認識。</div>]]></description>
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         <pubDate>2022-03-17 17:20:56 UTC</pubDate>
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         <title>組織核心工作</title>
         <author>maggielo2</author>
         <link>https://padlet.com/maggielo2/tynxj5dnj2ajbok1/wish/2100645618</link>
         <description><![CDATA[<ul><li>倡議: 醫療 ( 跨專科集中治療 、 兩岸三地數據庫 ) ;&nbsp; 社會服務支援 (個案管理 、 情緒支援及家庭支援 、 生活及社交心理支援)</li><li>&nbsp;罕病本地醫療人才培育 ( 海外交流/研討會資助 、 海外醫生到港會診及臨床經驗交流 )</li><li>&nbsp;會員連結及互助:&nbsp; 經驗交流 (whatsapp, 聚會), 以倡議成為互助結連的載體&nbsp;</li><li>&nbsp;公眾教育 : 真人圖書&nbsp; 、其他公眾教育活動(3cm巡播)&nbsp;</li><li>疫情下 , 回應防疫品、上門派飯的需要、關心會員 (確診支援 , 藥物資訊, 也會幫手聯繫實習醫生諮詢意見)</li></ul><div><br></div>]]></description>
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         <pubDate>2022-03-17 18:49:17 UTC</pubDate>
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      <item>
         <title>2015</title>
         <author>maggielo2</author>
         <link>https://padlet.com/maggielo2/tynxj5dnj2ajbok1/wish/2100646020</link>
         <description><![CDATA[]]></description>
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         <pubDate>2022-03-17 18:49:37 UTC</pubDate>
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      <item>
         <title>2016</title>
         <author>maggielo2</author>
         <link>https://padlet.com/maggielo2/tynxj5dnj2ajbok1/wish/2100647365</link>
         <description><![CDATA[]]></description>
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         <pubDate>2022-03-17 18:50:41 UTC</pubDate>
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      <item>
         <title>2017</title>
         <author>maggielo2</author>
         <link>https://padlet.com/maggielo2/tynxj5dnj2ajbok1/wish/2100647675</link>
         <description><![CDATA[]]></description>
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         <pubDate>2022-03-17 18:50:56 UTC</pubDate>
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      <item>
         <title>2018</title>
         <author>maggielo2</author>
         <link>https://padlet.com/maggielo2/tynxj5dnj2ajbok1/wish/2100647926</link>
         <description><![CDATA[]]></description>
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         <pubDate>2022-03-17 18:51:04 UTC</pubDate>
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      <item>
         <title>2019</title>
         <author>maggielo2</author>
         <link>https://padlet.com/maggielo2/tynxj5dnj2ajbok1/wish/2100648039</link>
         <description><![CDATA[]]></description>
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         <pubDate>2022-03-17 18:51:10 UTC</pubDate>
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      <item>
         <title>2020</title>
         <author>maggielo2</author>
         <link>https://padlet.com/maggielo2/tynxj5dnj2ajbok1/wish/2100648165</link>
         <description><![CDATA[]]></description>
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         <pubDate>2022-03-17 18:51:15 UTC</pubDate>
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      <item>
         <title>2021</title>
         <author>maggielo2</author>
         <link>https://padlet.com/maggielo2/tynxj5dnj2ajbok1/wish/2100648388</link>
         <description><![CDATA[]]></description>
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         <pubDate>2022-03-17 18:51:27 UTC</pubDate>
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      <item>
         <title>2022</title>
         <author>maggielo2</author>
         <link>https://padlet.com/maggielo2/tynxj5dnj2ajbok1/wish/2100648538</link>
         <description><![CDATA[]]></description>
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         <pubDate>2022-03-17 18:51:35 UTC</pubDate>
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      <item>
         <title>2025</title>
         <author>maggielo2</author>
         <link>https://padlet.com/maggielo2/tynxj5dnj2ajbok1/wish/2100654839</link>
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         <pubDate>2022-03-17 18:56:10 UTC</pubDate>
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      </item>
      <item>
         <title>醫館局公布結節性硬化症的 mTOR 抑制劑納入專用藥物</title>
         <author>maggielo2</author>
         <link>https://padlet.com/maggielo2/tynxj5dnj2ajbok1/wish/2100667788</link>
         <description><![CDATA[]]></description>
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         <pubDate>2022-03-17 19:06:15 UTC</pubDate>
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      <item>
         <title></title>
         <author>maggielo2</author>
         <link>https://padlet.com/maggielo2/tynxj5dnj2ajbok1/wish/2100672953</link>
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         <pubDate>2022-03-17 19:10:27 UTC</pubDate>
         <guid>https://padlet.com/maggielo2/tynxj5dnj2ajbok1/wish/2100672953</guid>
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      <item>
         <title>香港電台第二台《同埋. 繼續傾》</title>
         <author>maggielo2</author>
         <link>https://padlet.com/maggielo2/tynxj5dnj2ajbok1/wish/2100673395</link>
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         <pubDate>2022-03-17 19:10:49 UTC</pubDate>
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      <item>
         <title></title>
         <author>maggielo2</author>
         <link>https://padlet.com/maggielo2/tynxj5dnj2ajbok1/wish/2100674979</link>
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         <pubDate>2022-03-17 19:11:52 UTC</pubDate>
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      <item>
         <title></title>
         <author>maggielo2</author>
         <link>https://padlet.com/maggielo2/tynxj5dnj2ajbok1/wish/2100675993</link>
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         <pubDate>2022-03-17 19:12:43 UTC</pubDate>
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      <item>
         <title>協會三年多以來爭取的mTOR 抑制劑, AFINITOR (everolimus)於五月中，符合抽筋適應症的病友可以通過撒瑪利亞基金申請藥物資助，協會九成以上的病友均可受惠！</title>
         <author>maggielo2</author>
         <link>https://padlet.com/maggielo2/tynxj5dnj2ajbok1/wish/2100679946</link>
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         <pubDate>2022-03-17 19:15:58 UTC</pubDate>
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      <item>
         <title></title>
         <author></author>
         <link>https://padlet.com/maggielo2/tynxj5dnj2ajbok1/wish/2101344671</link>
         <description><![CDATA[<div>-疫情下物資支援及連結社區<br>-感染家庭支援(醫科實習醫生顧問及資源提供)</div>]]></description>
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         <pubDate>2022-03-18 04:57:06 UTC</pubDate>
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      <item>
         <title></title>
         <author></author>
         <link>https://padlet.com/maggielo2/tynxj5dnj2ajbok1/wish/2101352207</link>
         <description><![CDATA[<div>中醫輔助治療探索</div>]]></description>
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         <pubDate>2022-03-18 05:04:50 UTC</pubDate>
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      <item>
         <title>(4/2017)第一次上立法會，池女士一同分享，分享後不久離世 (Rebecca深刻)</title>
         <author></author>
         <link>https://padlet.com/maggielo2/tynxj5dnj2ajbok1/wish/2101361937</link>
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         <pubDate>2022-03-18 05:14:31 UTC</pubDate>
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         <title>(3/2017)畫展-組織第一次公眾活動，高永文局長答應出席，十分驚喜，因組織當時好小型，無想到局長認同、支持和被重視；加上有很多媒體採訪，自此很多網絡由此建立</title>
         <author></author>
         <link>https://padlet.com/maggielo2/tynxj5dnj2ajbok1/wish/2101363364</link>
         <description><![CDATA[]]></description>
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         <pubDate>2022-03-18 05:15:58 UTC</pubDate>
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      <item>
         <title>醫管局主動聯絡，跟進納入藥物名冊</title>
         <author></author>
         <link>https://padlet.com/maggielo2/tynxj5dnj2ajbok1/wish/2101368891</link>
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         <pubDate>2022-03-18 05:21:57 UTC</pubDate>
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      <item>
         <title>HKU學生主動透過真人圖書活動，主動邀請和認識罕見病患者，沒想到醫生/學生會咁CARE我地呢個小眾，讓我們看見希望</title>
         <author></author>
         <link>https://padlet.com/maggielo2/tynxj5dnj2ajbok1/wish/2101371863</link>
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         <pubDate>2022-03-18 05:25:09 UTC</pubDate>
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      <item>
         <title>因為有「協會」，所以容易結連和被看見</title>
         <author></author>
         <link>https://padlet.com/maggielo2/tynxj5dnj2ajbok1/wish/2101374988</link>
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         <pubDate>2022-03-18 05:28:32 UTC</pubDate>
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      <item>
         <title>「協會」跟台灣及內地連結和交流，能拓濶患者視野，參考其他地區有效的做法</title>
         <author></author>
         <link>https://padlet.com/maggielo2/tynxj5dnj2ajbok1/wish/2101377249</link>
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         <pubDate>2022-03-18 05:31:12 UTC</pubDate>
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         <title>深刻的事, 有參與試藥計劃, 也幫到自己很多</title>
         <author>maggielo2</author>
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         <pubDate>2022-03-18 13:34:06 UTC</pubDate>
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