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北海道難病連主催のオンラインイベント 「いのち」と「笑顔」の発表会でお送りした 映像作品です。 表皮水疱症の梅津真里奈が代表を務めるチーム SU・KI・Yakiが企画運営しました。 気 #北海道 #難病連 #自主制作 #自主制作映画 #自主制作ドラマ #ドラマ #drama #絵本 #絵本の読み聞かせ #車いす #ルーペ #白杖 #hokkaido...","preview":{"posterSrc":"//avatars.mds.yandex.net/get-vthumb/4429110/1194ed2720e2ffc2ee0fe7335ac95b38/564x318_1"},"target":"_self","position":"1","reqid":"1765592135170462-16141195820554267382-balancer-l7leveler-kubr-yp-vla-93-BAL","summary":{"fullTextUrl":"/int_search_summary?data=http%3A%2F%2Fwww.youtube.com%2Fwatch%3Fv%3DZkT1szBrYLc","linkTemplate":"/video/preview/17796484543095647923?parent-reqid=1765592135170462-16141195820554267382-balancer-l7leveler-kubr-yp-vla-93-BAL&text=NPO%E6%B3%95%E4%BA%BA%E8%A1%A8%E7%9A%AE%E6%B0%B4%E7%96%B1%E7%97%87%E5%8F%8B%E3%81%AE%E4%BC%9ADebRA+Japan&t=%%timestamp%%&ask_summarization=1"},"isAdultDoc":false,"relatedParams":{"text":"「いのち」と「笑顔」の発表会2023","related_orig_text":"NPO法人表皮水疱症友の会DebRA 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◆Twitter / sciportaljst ◆Facebook / sciportaljst ◆運営 国立研究開発法人科学技術振興機構（JST） https://www.jst.go.jp/ #SciencePortal #表皮水疱症 #難病治療...","preview":{"posterSrc":"//avatars.mds.yandex.net/get-vthumb/3480205/fa1093870ad7d8a0456f54806b5cbbda/564x318_1","videoSrc":"https://video-preview.s3.yandex.net/YvORBAIAAAA.mp4","videoType":"video/mp4"},"target":"_self","position":"6","reqid":"1765592135170462-16141195820554267382-balancer-l7leveler-kubr-yp-vla-93-BAL","summary":{"fullTextUrl":"/int_search_summary?data=http%3A%2F%2Fwww.youtube.com%2Fwatch%3Fv%3DBvbWcOJfRvo","linkTemplate":"/video/preview/6497305031813546178?parent-reqid=1765592135170462-16141195820554267382-balancer-l7leveler-kubr-yp-vla-93-BAL&text=NPO%E6%B3%95%E4%BA%BA%E8%A1%A8%E7%9A%AE%E6%B0%B4%E7%96%B1%E7%97%87%E5%8F%8B%E3%81%AE%E4%BC%9ADebRA+Japan&t=%%timestamp%%&ask_summarization=1"},"isAdultDoc":false,"relatedParams":{"text":"表皮水疱症 先端医学研究と患者たちの日々｜Science Portal動画ニュース（2022年5月16日配信）","related_orig_text":"NPO法人表皮水疱症友の会DebRA 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http://mfms.jp/ustream/2012/0818/vol-... Npo法人マイフェイス・マイスタイル（MFMS）公式webサイト http://mfms.jp/ MFMS公式facebook / mfms.jp MFMS公式Twitter / mfms_official...","preview":{"posterSrc":"//avatars.mds.yandex.net/get-vthumb/2431765/abbc9dd8932df6b16c7702da5b03c0e9/564x318_1","videoSrc":"https://video-preview.s3.yandex.net/qxQs2QAAAAA.mp4","videoType":"video/mp4"},"target":"_self","position":"7","reqid":"1765592135170462-16141195820554267382-balancer-l7leveler-kubr-yp-vla-93-BAL","summary":{"fullTextUrl":"/int_search_summary?data=http%3A%2F%2Fwww.youtube.com%2Fwatch%3Fv%3DvMKs_lntkOU","linkTemplate":"/video/preview/13877832006368595191?parent-reqid=1765592135170462-16141195820554267382-balancer-l7leveler-kubr-yp-vla-93-BAL&text=NPO%E6%B3%95%E4%BA%BA%E8%A1%A8%E7%9A%AE%E6%B0%B4%E7%96%B1%E7%97%87%E5%8F%8B%E3%81%AE%E4%BC%9ADebRA+Japan&t=%%timestamp%%&ask_summarization=1"},"isAdultDoc":false,"relatedParams":{"text":"Vol.073 ゲスト ： 薄田たか子さん （表皮水疱症（ひょうひすいほうしょう）） （2012/08/15）","related_orig_text":"NPO法人表皮水疱症友の会DebRA 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この病気で苦しんだ姉を持つ絵描きが、その姉の想いに応えようとしたんです。 なんでもない、普通のお話です。 どこにでもある普通のお話です。 」ただ、そう思っただけです。 でも、その活動を見ていた周囲の人達が、一人、また一人と集っていきました。","preview":{"posterSrc":"//avatars.mds.yandex.net/get-vthumb/4002902/6d7c950b5c01f35ae2a208887f35f62f/564x318_1","videoSrc":"https://video-preview.s3.yandex.net/-X0QJQAAAAA.mp4","videoType":"video/mp4"},"target":"_self","position":"13","reqid":"1765592135170462-16141195820554267382-balancer-l7leveler-kubr-yp-vla-93-BAL","summary":{"fullTextUrl":"/int_search_summary?data=http%3A%2F%2Fwww.youtube.com%2Fwatch%3Fv%3D_oCwYYRE2kA","linkTemplate":"/video/preview/17809750300394887315?parent-reqid=1765592135170462-16141195820554267382-balancer-l7leveler-kubr-yp-vla-93-BAL&text=NPO%E6%B3%95%E4%BA%BA%E8%A1%A8%E7%9A%AE%E6%B0%B4%E7%96%B1%E7%97%87%E5%8F%8B%E3%81%AE%E4%BC%9ADebRA+Japan&t=%%timestamp%%&ask_summarization=1"},"isAdultDoc":false,"relatedParams":{"text":"誰も知らない難病\"表皮水疱症\"をきっかけに","related_orig_text":"NPO法人表皮水疱症友の会DebRA 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ない説を検証するために、昨日作ったお好み焼きが美味しかった話を書こうと思います。 Twitterで流れてきたレシピでキャベツのみじん切りと山芋をすりおろしたものを混ぜて、調味料を色々いれたお好み焼きを作りました。 小麦粉も多少入れますが、生地が緩いのでひっくり返すのが大変。 ですがとてもヘルシーで美味しかったです！ 限は出来ないのでヘ...","preview":{"posterSrc":"//avatars.mds.yandex.net/get-vthumb/998069/d7eb2778214f5e48eba6acfd19667ea6/564x318_1","videoSrc":"https://video-preview.s3.yandex.net/P5STKQIAAAA.mp4","videoType":"video/mp4"},"target":"_self","position":"18","reqid":"1765592135170462-16141195820554267382-balancer-l7leveler-kubr-yp-vla-93-BAL","summary":{"fullTextUrl":"/int_search_summary?data=http%3A%2F%2Fwww.youtube.com%2Fwatch%3Fv%3DRegX5xH96Kk","linkTemplate":"/video/preview/2439628557970665270?parent-reqid=1765592135170462-16141195820554267382-balancer-l7leveler-kubr-yp-vla-93-BAL&text=NPO%E6%B3%95%E4%BA%BA%E8%A1%A8%E7%9A%AE%E6%B0%B4%E7%96%B1%E7%97%87%E5%8F%8B%E3%81%AE%E4%BC%9ADebRA+Japan&t=%%timestamp%%&ask_summarization=1"},"isAdultDoc":false,"relatedParams":{"text":"【表皮水疱症】新しいガーゼの紹介と最近追加された薬の紹介をします！ 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