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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":"1765470667013074-9458865811959672588-balancer-l7leveler-kubr-yp-sas-118-BAL","summary":{"fullTextUrl":"/int_search_summary?data=http%3A%2F%2Fwww.youtube.com%2Fwatch%3Fv%3DZkT1szBrYLc","linkTemplate":"/video/preview/17796484543095647923?parent-reqid=1765470667013074-9458865811959672588-balancer-l7leveler-kubr-yp-sas-118-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":"1765470667013074-9458865811959672588-balancer-l7leveler-kubr-yp-sas-118-BAL","summary":{"fullTextUrl":"/int_search_summary?data=http%3A%2F%2Fwww.youtube.com%2Fwatch%3Fv%3DBvbWcOJfRvo","linkTemplate":"/video/preview/6497305031813546178?parent-reqid=1765470667013074-9458865811959672588-balancer-l7leveler-kubr-yp-sas-118-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-... 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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":"1765470667013074-9458865811959672588-balancer-l7leveler-kubr-yp-sas-118-BAL","summary":{"fullTextUrl":"/int_search_summary?data=http%3A%2F%2Fwww.youtube.com%2Fwatch%3Fv%3D_oCwYYRE2kA","linkTemplate":"/video/preview/17809750300394887315?parent-reqid=1765470667013074-9458865811959672588-balancer-l7leveler-kubr-yp-sas-118-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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