{"id":891,"date":"2017-02-26T22:11:39","date_gmt":"2017-02-26T22:11:39","guid":{"rendered":"https:\/\/www.progeriaresearch.org\/?page_id=891"},"modified":"2025-12-10T08:33:07","modified_gmt":"2025-12-10T13:33:07","slug":"patient-care-and-handbook","status":"publish","type":"page","link":"https:\/\/www.progeriaresearch.org\/es\/patient-care-and-handbook\/","title":{"rendered":"Atenci\u00f3n al paciente y manual"},"content":{"rendered":"

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Atenci\u00f3n cl\u00ednica de la progeria<\/h1>\n

Manual<\/h1>\n

 <\/p>\n

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\"\"Manual de atenci\u00f3n cl\u00ednica de la progeria<\/span> Objetivo
<\/strong>Como la mayor\u00eda de los profesionales m\u00e9dicos nunca han tratado a un ni\u00f1o con progeria, a menudo surgen preguntas sobre c\u00f3mo optimizar la calidad de vida a trav\u00e9s de la atenci\u00f3n diaria y el tratamiento m\u00e9dico. Para responder a esa necesidad, en abril de 2010, PRF public\u00f3 la primera edici\u00f3n de Manual de atenci\u00f3n cl\u00ednica de la progeria<\/em>, para familias afectadas por progeria y sus m\u00e9dicos. Desde datos b\u00e1sicos de salud hasta recomendaciones de cuidados diarios y pautas de tratamiento extensas, este manual de 131 p\u00e1ginas ayuda a responder muchas preguntas para ni\u00f1os con progeria en todo el mundo.<\/p>\n

Actualizaciones 2019
<\/strong>En marzo de 2019, PRF actualiz\u00f3 y edit\u00f3 cada secci\u00f3n de la primera edici\u00f3n del manual. Algunos de los cambios m\u00e1s importantes de la segunda edici\u00f3n incluyen una nueva secci\u00f3n sobre gen\u00e9tica y asesoramiento gen\u00e9tico para el profesional de la salud, y una gran cantidad de informaci\u00f3n nueva de estudios cl\u00ednicos recientes derivados de la comunidad de investigaci\u00f3n sobre progeria, incluida nueva informaci\u00f3n cardiovascular, neurovascular y endocrina, as\u00ed como recomendaciones.<\/p>\n

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Al utilizar estos materiales para informes o presentaciones, incluya lo siguiente:
Fuente:\u00a0Manual de atenci\u00f3n cl\u00ednica de la progeria: una gu\u00eda para familias y proveedores de atenci\u00f3n m\u00e9dica de ni\u00f1os con progeria.<\/em><\/strong>
Copyright 2019 de The Progeria Research Foundation. Todos los derechos reservados.<\/p>\n

Continuaremos actualizando estos materiales a medida que tengamos m\u00e1s informaci\u00f3n. Si tiene preguntas m\u00e9dicas espec\u00edficas, comun\u00edquese con nosotros al (978) 535-2594 o\u00a0info@progeriaresearch.org.<\/a><\/p>\n

Gracias a todos los ni\u00f1os y familias que participan en estos proyectos tan importantes, y a los m\u00e9dicos y otros expertos que contribuyen a estas recomendaciones.<\/p>\n

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Gracias a nuestros traductores voluntarios
<\/strong>Un agradecimiento especial al Dr. Muneaki Matsuo por organizar la traducci\u00f3n del 2Dakota del Norte<\/sup> Edici\u00f3n \u2013 Manual japon\u00e9s<\/em>; al Dr. Tadashi Satoh y al personal m\u00e9dico de Pediatr\u00eda de la Universidad de Saga por su ayuda con la traducci\u00f3n; y al Profesor Kenji Ihara, Universidad de Oita, y a la Dra. Rika Kozaki, Centro Nacional para la Salud y el Desarrollo Infantil, por la revisi\u00f3n.<\/p>\n

Nuestro m\u00e1s sincero agradecimiento y reconocimiento al Dr. Daniel Tanure y a la Dra. Laura Cheib por el tiempo y la energ\u00eda que dedicaron a la traducci\u00f3n al portugu\u00e9s de The Progeria Handbook \u2013 2da Edici\u00f3n.<\/p>\n

Agradecemos a Sammy Basso y a la Asociaci\u00f3n Italiana Progeria Sammy Basso<\/a> por organizar y financiar la traducci\u00f3n al italiano de The Progeria Clinical Care Handbook \u2013 2nd Edition, y a Elise Treggia por el tiempo y el esfuerzo que dedic\u00f3 a la traducci\u00f3n.<\/span><\/p>\n

Una vez m\u00e1s, extendemos nuestro agradecimiento a Sammy Basso y a Asociaci\u00f3n Italiana Progeria Sammy Basso<\/a> por organizar y financiar la traducci\u00f3n al \u00e1rabe de The Progeria Clinical Care Handbook \u2013 2nd Edition, a Elise Treggia por coordinar con su red de traductores y a Sara Anani por su hermoso trabajo en la traducci\u00f3n.<\/span><\/p>\n

Muchas gracias a<\/span>\u00a0Jieun Lee, MD, PhD, y el personal del Hospital Universitario Inha en Incheon, Corea del Sur, quienes prepararon la traducci\u00f3n al coreano con el apoyo del Ministerio de Salud y Bienestar de Corea y el Instituto de Desarrollo de la Industria de la Salud de Corea.<\/span><\/p>\n

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Como la mayor\u00eda de los profesionales m\u00e9dicos nunca han tratado a un ni\u00f1o con progeria, a menudo surgen preguntas sobre c\u00f3mo optimizar la calidad de vida a trav\u00e9s de la atenci\u00f3n diaria y el tratamiento m\u00e9dico. Para responder a esa necesidad, en abril de 2010, PRF public\u00f3 la primera edici\u00f3n de Manual de progeria<\/em>, para familias afectadas por progeria y sus m\u00e9dicos. Desde datos b\u00e1sicos de salud hasta recomendaciones de cuidados diarios y pautas de tratamiento extensas, este manual de 131 p\u00e1ginas ayuda a responder muchas preguntas para ni\u00f1os con progeria en todo el mundo.<\/p>\n

En marzo de 2019, PRF actualiz\u00f3 y edit\u00f3 cada secci\u00f3n de la primera edici\u00f3n del manual. Algunos de los cambios m\u00e1s importantes de la segunda edici\u00f3n incluyen una nueva secci\u00f3n sobre gen\u00e9tica y asesoramiento gen\u00e9tico para el profesional de la salud, y una gran cantidad de informaci\u00f3n nueva de estudios cl\u00ednicos recientes derivados de la comunidad de investigaci\u00f3n sobre progeria, incluida nueva informaci\u00f3n cardiovascular, neurovascular y endocrina, as\u00ed como recomendaciones.<\/p>\n

 <\/p>\n

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Al utilizar estos materiales para informes o presentaciones, incluya lo siguiente:
Fuente: El manual de la progeria: una gu\u00eda para familias y proveedores de atenci\u00f3n m\u00e9dica de ni\u00f1os con progeria.<\/em><\/strong>
Copyright 2019 de The Progeria Research Foundation. Todos los derechos reservados.<\/p>\n

Continuaremos actualizando estos materiales a medida que tengamos m\u00e1s informaci\u00f3n. Si tiene preguntas m\u00e9dicas espec\u00edficas, comun\u00edquese con nosotros al (978) 535-2594 o info@progeriaresearch.org.<\/a><\/p>\n

Gracias a todos los ni\u00f1os y familias que participan en estos proyectos tan importantes, y a los m\u00e9dicos y otros expertos que contribuyen a estas recomendaciones.<\/p>\n

 <\/p>\n

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Inscribirse<\/h2>\n

Para nuestro<\/h2>\n

\u00a1Actualizaciones!<\/h2>\n

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Juntos, nosotros<\/h2>\n

VOLUNTAD<\/em><\/h2>\n

\u00a1Encuentra la cura!<\/h2>\n

[\/et_pb_cta][\/et_pb_column][et_pb_column tipo=\u201d1_2\u2033 _builder_version=\u201d4.16\u2033 relleno_personalizado=\u201d|||\u201d Informaci\u00f3n global de colores = "{}" relleno_personalizado__hover = "|||"][et_pb_image src = "https:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2025\/05\/2025-strip-for-website-footer-no-years.png" t\u00edtulo = "Franja 2025 para pie de p\u00e1gina web sin a\u00f1os" _builder_version = "4.27.4" _module_preset = "predeterminado" margen_personalizado = "35px||||falso|falso] Informaci\u00f3n global de colores = "{}"][\/et_pb_image][\/et_pb_column][\/et_pb_row][\/et_pb_section]<\/p>","protected":false},"excerpt":{"rendered":"

[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\/es\/patient-care-and-handbook\/\" \/>\n<meta property=\"og:locale\" content=\"es_ES\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"patient 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