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\"\"\ud504\ub85c\uac8c\ub9ac\uc544 \uc784\uc0c1 \uce58\ub8cc \ud578\ub4dc\ubd81<\/span> \ubaa9\uc801
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2019 \uc5c5\ub370\uc774\ud2b8
<\/strong>2019\ub144 3\uc6d4, PRF\ub294 \ud578\ub4dc\ubd81 1\ud310\uc758 \ubaa8\ub4e0 \uc139\uc158\uc744 \uc5c5\ub370\uc774\ud2b8\ud558\uace0 \ud3b8\uc9d1\ud588\uc2b5\ub2c8\ub2e4. 2\ud310\uc758 \uac00\uc7a5 \ud070 \ubcc0\uacbd \uc0ac\ud56d \uc911 \uc77c\ubd80\ub294 \uac74\uac15 \uc804\ubb38\uac00\ub97c \uc704\ud55c \uc720\uc804\ud559 \ubc0f \uc720\uc804 \uc0c1\ub2f4\uc5d0 \ub300\ud55c \uc0c8\ub85c\uc6b4 \uc139\uc158\uacfc \ud504\ub85c\uac8c\ub9ac\uc544 \uc5f0\uad6c \ucee4\ubba4\ub2c8\ud2f0\uc5d0\uc11c \ube44\ub86f\ub41c \ucd5c\uadfc \uc784\uc0c1 \uc5f0\uad6c\uc758 \uc0c8\ub85c\uc6b4 \uc815\ubcf4, \uc0c8\ub85c\uc6b4 \uc2ec\ud608\uad00, \uc2e0\uacbd\ud608\uad00 \ubc0f \ub0b4\ubd84\ube44 \uc815\ubcf4\uc640 \uad8c\uc7a5 \uc0ac\ud56d\uc744 \ud3ec\ud568\ud569\ub2c8\ub2e4.<\/p>\n

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\uc774 \uc790\ub8cc\ub97c \ubcf4\uace0\uc11c\ub098 \ud504\ub808\uc820\ud14c\uc774\uc158\uc5d0 \uc0ac\uc6a9\ud560 \uacbd\uc6b0 \ub2e4\uc74c \ub0b4\uc6a9\uc744 \ud3ec\ud568\ud558\uc138\uc694.
\uc6d0\ucc9c:\u00a0\ud504\ub85c\uac8c\ub9ac\uc544 \uc784\uc0c1 \uce58\ub8cc \ud578\ub4dc\ubd81; \ud504\ub85c\uac8c\ub9ac\uc544\ub97c \uc553\uace0 \uc788\ub294 \uc5b4\ub9b0\uc774\uc758 \uac00\uc871\uacfc \uc758\ub8cc \uc11c\ube44\uc2a4 \uc81c\uacf5\uc790\ub97c \uc704\ud55c \uc548\ub0b4\uc11c.<\/em><\/strong>
\uc800\uc791\uad8c 2019 The Progeria Research Foundation. \ubaa8\ub4e0 \uad8c\ub9ac \ubcf4\uc720.<\/p>\n

\ub354 \ub9ce\uc740 \uc815\ubcf4\uac00 \ub4e4\uc5b4\uc624\uba74 \uc774 \uc790\ub8cc\ub97c \uacc4\uc18d \uc5c5\ub370\uc774\ud2b8\ud560 \uac83\uc785\ub2c8\ub2e4. \ud2b9\uc815 \uc758\ub8cc \uc9c8\ubb38\uc774 \uc788\uc73c\uc2dc\uba74 (978) 535-2594\ub85c \uc5f0\ub77d\ud574 \uc8fc\uc2ed\uc2dc\uc624.\u00a0info@progeriaresearch.org.<\/a><\/p>\n

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<\/strong>\ubc88\uc5ed\uc744 \uc870\uc9c1\ud574 \uc8fc\uc2e0 Muneaki Matsuo \ubc15\uc0ac\uaed8 \ud2b9\ubcc4\ud788 \uac10\uc0ac\ub4dc\ub9bd\ub2c8\ub2e4. 2~\uc774\ub2e4<\/sup> \uc5d0\ub514\uc158 \u2013 \uc77c\ubcf8\uc5b4 \ud578\ub4dc\ubd81<\/em>; \ubc88\uc5ed\uc5d0 \ub3c4\uc6c0\uc744 \uc8fc\uc2e0 \uc0ac\ud1a0 \ud0c0\ub2e4\uc2dc \ubc15\uc0ac\ub2d8\uacfc \uc0ac\uac00\ub300\ud559\uad50 \uc18c\uc544\uacfc \uc758\ub8cc\uc9c4\uc5d0\uac8c \uadf8\ub9ac\uace0 \uad50\uc815\uc744 \uc704\ud574 \uc624\uc774\ud0c0 \ub300\ud559\uc758 \uc774\ud558\ub77c \uac90\uc9c0 \uad50\uc218\uc640 \uad6d\ub9bd \uc544\ub3d9 \uac74\uac15 \ubc1c\ub2ec \uc13c\ud130\uc758 \ucf54\uc790\ud0a4 \ub9ac\uce74 \ubc15\uc0ac\uc5d0\uac8c \uac10\uc0ac\ub4dc\ub9bd\ub2c8\ub2e4.<\/p>\n

Dr. Daniel Tanure\uc640 Dr. Laura Cheib\uc5d0\uac8c The Progeria Handbook \u2013 2nd Edition\uc758 \ud3ec\ub974\ud22c\uac08\uc5b4 \ubc88\uc5ed\uc5d0 \uc2dc\uac04\uacfc \uc5d0\ub108\uc9c0\ub97c \ubc14\uce5c \uac83\uc5d0 \uc9c4\uc2ec\uc73c\ub85c \uac10\uc0ac\ub4dc\ub9bd\ub2c8\ub2e4.<\/p>\n

\uc6b0\ub9ac\ub294 Sammy Basso\uc640 Associazione Italiana Progeria \uc0c8\ubbf8 \ubc14\uc18c<\/a> \uc774\ud0c8\ub9ac\uc544\uc5b4\ub85c Progeria Clinical Care Handbook \u2013 2nd Edition\uc744 \ubc88\uc5ed\ud558\uace0 \uc870\uc9c1\ud558\uace0 \uc790\uae08\uc744 \uc9c0\uc6d0\ud574 \uc8fc\uc2e0 \uac83\uc5d0 \ub300\ud574, \uadf8\ub9ac\uace0 \ubc88\uc5ed\uc5d0 \uc2dc\uac04\uacfc \ub178\ub825\uc744 \ud22c\uc790\ud574 \uc8fc\uc2e0 Elise Treggia\uc5d0\uac8c \uac10\uc0ac\ub4dc\ub9bd\ub2c8\ub2e4.<\/span><\/p>\n

\ub2e4\uc2dc \ud55c\ubc88, \uc6b0\ub9ac\ub294 Sammy Basso\uc640 Associazione Italiana Progeria \uc0c8\ubbf8 \ubc14\uc18c<\/a> Progeria \uc784\uc0c1 \uce58\ub8cc \ud578\ub4dc\ubd81 2\ud310\uc758 \uc544\ub78d\uc5b4 \ubc88\uc5ed\uc744 \uc870\uc9c1\ud558\uace0 \uc790\uae08\uc744 \uc9c0\uc6d0\ud574 \uc8fc\uc2e0 Elise Treggia\uaed8, \ubc88\uc5ed\uc790 \ub124\ud2b8\uc6cc\ud06c\uc640 \ud611\ub825\ud574 \uc8fc\uc2e0 Elise Treggia\uaed8, \uadf8\ub9ac\uace0 \ubc88\uc5ed\uc5d0\uc11c \ud6cc\ub96d\ud55c \uc791\uc5c5\uc744 \ud574\uc8fc\uc2e0 Sara Anani\uaed8 \uac10\uc0ac\ub4dc\ub9bd\ub2c8\ub2e4.<\/span><\/p>\n

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\ub300\ubd80\ubd84\uc758 \uc758\ub8cc \ubcf4\ud638\uc790\ub294 \ud504\ub85c\uac8c\ub9ac\uc544\uac00 \uc788\ub294 \uc544\uc774\ub97c \uce58\ub8cc\ud55c \uc801\uc774 \uc5c6\uae30 \ub54c\ubb38\uc5d0 \uc77c\uc0c1\uc801\uc778 \uad00\ub9ac\uc640 \uc758\ub8cc \uce58\ub8cc\ub97c \ud1b5\ud574 \uc0b6\uc758 \uc9c8\uc744 \ucd5c\uc801\ud654\ud558\ub294 \ubc29\ubc95\uc5d0 \ub300\ud55c \uc9c8\ubb38\uc774 \uc885\uc885 \uc788\uc2b5\ub2c8\ub2e4. \uc774\ub7ec\ud55c \uc694\uad6c\uc5d0 \ub2f5\ud558\uae30 \uc704\ud574 PRF\ub294 2010\ub144 4\uc6d4\uc5d0 \uccab \ubc88\uc9f8 \ud310\uc744 \ucd9c\ud310\ud588\uc2b5\ub2c8\ub2e4. \ud504\ub85c\uac8c\ub9ac\uc544 \ud578\ub4dc\ubd81<\/em>, \ud504\ub85c\uac8c\ub9ac\uc544\uc640 \uc758\uc0ac\uc758 \uc601\ud5a5\uc744 \ubc1b\uc740 \uac00\uc871\uc744 \uc704\ud574. \uae30\ubcf8\uc801\uc778 \uac74\uac15 \uc815\ubcf4\ubd80\ud130 \uc77c\uc0c1\uc801\uc778 \uad00\ub9ac \uad8c\uc7a5 \uc0ac\ud56d, \uad11\ubc94\uc704\ud55c \uce58\ub8cc \uc9c0\uce68\uae4c\uc9c0, \uc774 131\ud398\uc774\uc9c0 \ubd84\ub7c9\uc758 \ud578\ub4dc\ubd81\uc740 \uc804 \uc138\uacc4 \ud504\ub85c\uac8c\ub9ac\uc544\ub97c \uc553\uace0 \uc788\ub294 \uc5b4\ub9b0\uc774\ub4e4\uc758 \ub9ce\uc740 \uc9c8\ubb38\uc5d0 \ub2f5\ud558\ub294 \ub370 \ub3c4\uc6c0\uc774 \ub429\ub2c8\ub2e4.<\/p>\n

2019\ub144 3\uc6d4, PRF\ub294 \ud578\ub4dc\ubd81 1\ud310\uc758 \ubaa8\ub4e0 \uc139\uc158\uc744 \uc5c5\ub370\uc774\ud2b8\ud558\uace0 \ud3b8\uc9d1\ud588\uc2b5\ub2c8\ub2e4. 2\ud310\uc758 \uac00\uc7a5 \ud070 \ubcc0\uacbd \uc0ac\ud56d \uc911 \uc77c\ubd80\ub294 \uac74\uac15 \uc804\ubb38\uac00\ub97c \uc704\ud55c \uc720\uc804\ud559 \ubc0f \uc720\uc804 \uc0c1\ub2f4\uc5d0 \ub300\ud55c \uc0c8\ub85c\uc6b4 \uc139\uc158\uacfc \ud504\ub85c\uac8c\ub9ac\uc544 \uc5f0\uad6c \ucee4\ubba4\ub2c8\ud2f0\uc5d0\uc11c \ube44\ub86f\ub41c \ucd5c\uadfc \uc784\uc0c1 \uc5f0\uad6c\uc758 \uc0c8\ub85c\uc6b4 \uc815\ubcf4, \uc0c8\ub85c\uc6b4 \uc2ec\ud608\uad00, \uc2e0\uacbd\ud608\uad00 \ubc0f \ub0b4\ubd84\ube44 \uc815\ubcf4\uc640 \uad8c\uc7a5 \uc0ac\ud56d\uc744 \ud3ec\ud568\ud569\ub2c8\ub2e4.<\/p>\n

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\uc774 \uc790\ub8cc\ub97c \ubcf4\uace0\uc11c\ub098 \ud504\ub808\uc820\ud14c\uc774\uc158\uc5d0 \uc0ac\uc6a9\ud560 \uacbd\uc6b0 \ub2e4\uc74c \ub0b4\uc6a9\uc744 \ud3ec\ud568\ud558\uc138\uc694.
\uc6d0\ucc9c: \ud504\ub85c\uac8c\ub9ac\uc544 \ud578\ub4dc\ubd81: \ud504\ub85c\uac8c\ub9ac\uc544\ub97c \uc553\uace0 \uc788\ub294 \uc5b4\ub9b0\uc774\uc758 \uac00\uc871\uacfc \uc758\ub8cc \uc11c\ube44\uc2a4 \uc81c\uacf5\uc790\ub97c \uc704\ud55c \uac00\uc774\ub4dc.<\/em><\/strong>
\uc800\uc791\uad8c 2019 The Progeria Research Foundation. \ubaa8\ub4e0 \uad8c\ub9ac \ubcf4\uc720.<\/p>\n

\ub354 \ub9ce\uc740 \uc815\ubcf4\uac00 \ub4e4\uc5b4\uc624\uba74 \uc774 \uc790\ub8cc\ub97c \uacc4\uc18d \uc5c5\ub370\uc774\ud2b8\ud560 \uac83\uc785\ub2c8\ub2e4. \ud2b9\uc815 \uc758\ub8cc \uc9c8\ubb38\uc774 \uc788\uc73c\uc2dc\uba74 (978) 535-2594\ub85c \uc5f0\ub77d\ud574 \uc8fc\uc2ed\uc2dc\uc624. info@progeriaresearch.org.<\/a><\/p>\n

\uc774\ucc98\ub7fc \ub9e4\uc6b0 \uc911\uc694\ud55c \ud504\ub85c\uc81d\ud2b8\uc5d0 \ucc38\uc5ec\ud558\ub294 \ubaa8\ub4e0 \uc5b4\ub9b0\uc774\uc640 \uac00\uc871, \uadf8\ub9ac\uace0 \uc774\ub7ec\ud55c \uad8c\uc7a5 \uc0ac\ud56d\uc5d0 \uae30\uc5ec\ud55c \uc758\ub8cc \uc885\uc0ac\uc790 \ubc0f \uae30\ud0c0 \uc804\ubb38\uac00 \uc5ec\ub7ec\ubd84\uaed8 \uac10\uc0ac\ub4dc\ub9bd\ub2c8\ub2e4.<\/p>\n

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\uac00\uc785\ud558\uae30<\/h2>\n

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\uc5c5\ub370\uc774\ud2b8!<\/h2>\n

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\uc6b0\ub9ac\ub294 \ud568\uaed8<\/h2>\n

\ud560 \uac83\uc774\ub2e4<\/em><\/h2>\n

\uce58\ub8cc\ubc95\uc744 \ucc3e\uc544\ub77c!<\/h2>\n

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[et_pb_section fb_built=”1″ fullwidth=”on” disabled_on=”off|off|off” _builder_version=”4.16″ border_width_bottom=”55px” border_color_bottom=”#29327a” locked=”off” global_colors_info=”{}”][et_pb_fullwidth_header _builder_version=”4.24.3″ title_font=”||||||||” title_font_size=”55″ background_color=”#29327a” background_image=”https:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2019\/05\/parents-doctors-header-v4.jpg” custom_padding=”9vw||9vw||true” custom_padding_tablet=”” custom_padding_phone=”|56px||” custom_padding_last_edited=”on|desktop” title_font_size_tablet=”45px” title_font_size_phone=”40px” title_font_size_last_edited=”on|phone” z_index_tablet=”500″ custom_css_main_element=”background-position: center 18% !important;” global_colors_info=”{}”] Progeria Clinical Care Handbook   [\/et_pb_fullwidth_header][\/et_pb_section][et_pb_section fb_built=”1″ use_custom_gutter=”on” gutter_width=”1″ specialty=”on” padding_left_1=”35px” padding_left_2=”35px” padding_2_tablet=”|||0px” padding_2_phone=”|||0px” padding_2_last_edited=”on|desktop” module_class_1=”sidebar-secondary-nav” module_class=”handprint-bg” _builder_version=”4.16″ background_image=”https:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2019\/04\/blue-handprint-only.png” parallax=”on” parallax_method=”off” inner_width=”100%” inner_max_width=”100%” custom_padding=”0|0px|54px|0px|false|false” z_index_tablet=”500″ border_width_top=”10px” border_color_top=”#8fd2ed” use_custom_width=”on” […]<\/p>","protected":false},"author":1,"featured_media":0,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"_et_pb_use_builder":"on","_et_pb_old_content":"\t\t\t\t[vc_row][vc_column][vc_custom_heading text=\"Patient Care and Handbook\" font_container=\"tag:h1|text_align:center\" use_theme_fonts=\"yes\"][vc_column_text]\r\n\r\n\"\"Because most medical caretakers have never treated a child with Progeria, there are often questions about how to optimize quality of life through daily care and medical treatment. To answer that need, in April 2010, PRF published\u00a0the first edition of The Progeria Handbook<\/em>, for families touched by Progeria and their doctors. \u00a0From basic health facts to daily care recommendations to extensive treatment guidelines, this 131-page handbook helps answer many questions for children with Progeria throughout the world.\r\n\r\nIn March 2019, PRF updated and edited every section of the first edition of the handbook. Some of the biggest changes to the second edition include a new section on genetics and genetic counseling for the health professional, and a plethora of new information from recent clinical studies stemming from the Progeria research community, including new cardiovascular, neurovascular and endocrine information as well as recommendations.\r\n\r\n\"\" Click here<\/a> to download the second edition of the Handbook in English.\r\n\r\nWhen using these materials for reports or presentations, please include the following:\r\nSource:\u00a0The Progeria Handbook; A Guide for Families and Health Care Providers of Children with Progeria.<\/em><\/strong>\r\nCopyright 2019 by The Progeria Research Foundation. All rights reserved.\r\n\r\nWe will continue to update these materials as more information comes in. If you have specific medical questions, please contact us at (978) 535-2594 or\u00a0info@progeriaresearch.org.<\/a>\r\n\r\nThank you to every child and family who participates in these very important projects, and to the medical caretakers and other experts contributing to these recommendations.\r\n\r\n

\r\n\r\nThe first edition of the handbook is available in Spanish and Portuguese versions. Translations of the second edition of the handbook in Spanish and Portuguese will be posted on this page when available.\r\n\r\n\"\" Click here<\/a> to download the Portuguese version.\r\n\r\n\"\" Clique aqui<\/a> para fazer o download da vers\u00e3o em Portugu\u00eas.\r\n\r\n
\r\n\r\n\"\" <\/a>Click here<\/a> to download the Spanish version.\r\n\r\n\"\" <\/a>Haga clic aqui<\/a> para descargar la versi\u00f3n en espa\u00f1ol.[\/vc_column_text][\/vc_column][\/vc_row]\t\t","_et_gb_content_width":"","footnotes":"","_links_to":"","_links_to_target":""},"class_list":["post-891","page","type-page","status-publish","hentry"],"yoast_head":"\npatient handbook | The Progeria Research Foundation<\/title>\n<meta name=\"description\" content=\"The Progeria Handbook was published because most doctors have never treated a patient with Progeria, providing guidance for families and their doctors.\" \/>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/www.progeriaresearch.org\/ko\/patient-care-and-handbook\/\" \/>\n<meta property=\"og:locale\" content=\"ko_KR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"patient 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