{"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\/de\/patient-care-and-handbook\/","title":{"rendered":"Patientenversorgung und Handbuch"},"content":{"rendered":"<p>[et_pb_section fb_built=&#8221;1&#8243; fullwidth=&#8221;on&#8221; disabled_on=&#8221;off|off|off&#8221; _builder_version=&#8221;4.16&#8243; border_width_bottom=&#8221;55px&#8221; border_color_bottom=&#8221;#29327a&#8221; locked=&#8221;off&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_fullwidth_header _builder_version=&#8221;4.24.3&#8243; title_font=&#8221;||||||||&#8221; title_font_size=&#8221;55&#8243; background_color=&#8221;#29327a&#8221; background_image=&#8221;https:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2019\/05\/parents-doctors-header-v4.jpg&#8221; custom_padding=&#8221;9vw||9vw||true&#8221; custom_padding_tablet=&#8221;&#8221; custom_padding_phone=&#8221;|56px||&#8221; custom_padding_last_edited=&#8221;on|desktop&#8221; title_font_size_tablet=&#8221;45px&#8221; title_font_size_phone=&#8221;40px&#8221; title_font_size_last_edited=&#8221;on|phone&#8221; z_index_tablet=&#8221;500&#8243; custom_css_main_element=&#8221;background-position: center 18% !important;&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<h1>Klinische Versorgung bei Progerie<\/h1>\n<h1>Handbuch<\/h1>\n<p>&nbsp;<\/p>\n<p>[\/et_pb_fullwidth_header][\/et_pb_section][et_pb_section fb_built=\u201d1\u2033 use_custom_gutter=\u201don\u201d gutter_width=\u201d1\u2033 specialty=\u201don\u201d padding_left_1=\u201d35px\u201d padding_left_2=\u201d35px\u201d padding_2_tablet=\u201d|||0px\u201d padding_2_phone=\u201d|||0px\u201d padding_2_last_edited=\u201don|desktop\u201d module_class_1=\u201dsidebar-secondary-nav\u201d module_class=\u201dhandprint-bg\u201d _builder_version=\u201d4.16\u2033 background_image=\u201dhttps:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2019\/04\/blue-handprint-only.png\u201d parallax=\u201don\u201d parallax_method=\u201doff\u201d inner_width=\u201d100%\u201d inner_max_width=\u201d100%\u201d custom_padding=\u201d0|0px|54px|0px|false|false\u201d z_index_tablet=\u201d500\u2033 border_width_top=\u201d10px\u201d border_color_top=\u201d#8fd2ed\u201d use_custom_width=\u201dan\u201d width_unit=\u201daus\u201d custom_width_percent=\u201d100%\u201d global_colors_info=\u201d{}\u201d][et_pb_column type=\u201d1_4\u2033 _builder_version=\u201d4.16\u2033 custom_padding=\u201d|||\u201d global_colors_info=\u201d{}\u201d custom_padding__hover=\u201d|||\u201d][et_pb_sidebar area=\u201det_pb_widget_area_4\u2033 disabled_on=\u201don|on|off\u201d admin_label=\u201dSeitenleiste f\u00fcr Eltern und \u00c4rzte\u201d module_class=\u201dsubpage-sidebars\u201d _builder_version=\u201d4.16\u2033 animation_style=\u201dfade\u201d z_index_tablet=\u201d500\u2033 header_text_shadow_horizontal_length_tablet=\u201d0px\u201d header_text_shadow_vertical_length_tablet=\u201d0px\u201d header_text_shadow_blur_strength_tablet=\u201d1px\u201d body_text_shadow_horizontal_length_tablet=\u201d0px\u201d body_text_shadow_vertical_length_tablet=\u201d0px\u201d body_text_shadow_blur_strength_tablet=\u201d1px\u201d border_width_right=\u201d5px\u201d border_width_right_tablet=\u201d5px\u201d border_width_right_phone=\u201d5px\u201d box_shadow_horizontal_tablet=\u201d0px\u201d box_shadow_vertical_tablet=\u201d0px\u201d box_shadow_blur_tablet=\u201d40px\u201d box_shadow_spread_tablet=\u201d0px\u201d text_shadow_horizontal_length_tablet=\u201d0px\u201d text_shadow_vertical_length_tablet=\u201d0px\u201d text_shadow_blur_strength_tablet=\u201d1px\u201d gesperrt=\u201daus\u201d global_colors_info=\u201d{}\u201d]<br \/>\n[\/et_pb_sidebar][\/et_pb_column][et_pb_column type=&#8221;3_4&#8243; specialty_columns=&#8221;3&#8243; _builder_version=&#8221;4.16&#8243; custom_padding=&#8221;|||&#8221; global_colors_info=&#8221;{}&#8221; custom_padding__hover=&#8221;|||&#8221;][et_pb_row_inner custom_padding_last_edited=&#8221;on|phone&#8221; disabled_on=&#8221;on|on|&#8221; _builder_version=&#8221;4.16&#8243; custom_padding=&#8221;39.4375px|35px|0px||false|false&#8221; custom_padding_tablet=&#8221;|35px||35px||true&#8221; custom_padding_phone=&#8221;&#8221; animation_direction=&#8221;top&#8221; z_index_tablet=&#8221;500&#8243; global_colors_info=&#8221;{}&#8221;][et_pb_column_inner saved_specialty_column_type=&#8221;3_4&#8243; _builder_version=&#8221;4.16&#8243; custom_padding=&#8221;|||&#8221; global_colors_info=&#8221;{}&#8221; custom_padding__hover=&#8221;|||&#8221;][et_pb_text admin_label=&#8221;Purpose&#8221; _builder_version=&#8221;4.27.4&#8243; background_size=&#8221;initial&#8221; background_position=&#8221;top_left&#8221; background_repeat=&#8221;repeat&#8221; z_index_tablet=&#8221;500&#8243; box_shadow_horizontal_tablet=&#8221;0px&#8221; box_shadow_vertical_tablet=&#8221;0px&#8221; box_shadow_blur_tablet=&#8221;40px&#8221; box_shadow_spread_tablet=&#8221;0px&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<p><img loading=\"lazy\" decoding=\"async\" class=\"size-full wp-image-4629 alignright\" src=\"https:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2019\/03\/english-front.jpg\" alt=\"\" width=\"200\" height=\"257\" \/><strong><span>Das Handbuch zur klinischen Progerie-Behandlung<\/span> Zweck<br \/><\/strong>Da die meisten medizinischen Betreuer noch nie ein Kind mit Progerie behandelt haben, stellt sich oft die Frage, wie die Lebensqualit\u00e4t durch t\u00e4gliche Pflege und medizinische Behandlung optimiert werden kann. Um diesem Bedarf gerecht zu werden, ver\u00f6ffentlichte PRF im April 2010 die erste Ausgabe von <em>Das Handbuch zur klinischen Progerie-Behandlung<\/em>, f\u00fcr Familien, die von Progerie betroffen sind, und ihre \u00c4rzte. Von grundlegenden Gesundheitsfakten \u00fcber Empfehlungen zur t\u00e4glichen Pflege bis hin zu umfassenden Behandlungsrichtlinien hilft dieses 131-seitige Handbuch dabei, viele Fragen von Kindern mit Progerie auf der ganzen Welt zu beantworten.<\/p>\n<p><strong>Aktualisierungen 2019<br \/><\/strong>Im M\u00e4rz 2019 hat PRF jeden Abschnitt der ersten Ausgabe des Handbuchs aktualisiert und bearbeitet. Zu den gr\u00f6\u00dften \u00c4nderungen der zweiten Ausgabe geh\u00f6ren ein neuer Abschnitt \u00fcber Genetik und genetische Beratung f\u00fcr medizinisches Fachpersonal sowie eine F\u00fclle neuer Informationen aus aktuellen klinischen Studien der Progerie-Forschungsgemeinschaft, darunter neue kardiovaskul\u00e4re, neurovaskul\u00e4re und endokrine Informationen sowie Empfehlungen.<\/p>\n<p>[\/et_pb_text][\/et_pb_column_inner][\/et_pb_row_inner][et_pb_row_inner column_structure=\u201d1_2,1_2\u2033 custom_padding_last_edited=\u201dan|telefon\u201d disabled_on=\u201dan|an|aus\u201d _builder_version=\u201d4.16\u2033 custom_padding=\u201d|35px|0px||false|false\u201d custom_padding_tablet=\u201d|35px||35px||true\u201d custom_padding_phone=\u201d\u201d animation_direction=\u201doben\u201d z_index_tablet=\u201d500\u2033 global_colors_info=\u201d{}\u201d][et_pb_column_inner type=\u201d1_2\u2033 saved_specialty_column_type=\u201d3_4\u2033 _builder_version=\u201d4.16\u2033 benutzerdefinierte_Auff\u00fcllung=\u201d|||\u201d global_colors_info=\u201d{}\u201d custom_padding__hover=\u201d|||\u201d][et_pb_button button_url=\u201dhttps:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2022\/03\/English-Progeria-Handbook-Edition-2.pdf\u201d url_new_window=\u201don\u201d button_text=\u201d2. 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Auflage herunterladen \u2013 Portugiesisch\u201d admin_label=\u201dPortugiesisch 2. Auflage\u201d _builder_version=\u201d4.19.4\u2033 background_layout=\u201ddark\u201d custom_margin=\u201d||10px\u201d z_index_tablet=\u201d500\u2033 button_text_shadow_horizontal_length_tablet=\u201d0px\u201d button_text_shadow_vertical_length_tablet=\u201d0px\u201d button_text_shadow_blur_strength_tablet=\u201d1px\u201d box_shadow_horizontal_tablet=\u201d0px\u201d box_shadow_vertical_tablet=\u201d0px\u201d box_shadow_blur_tablet=\u201d40px\u201d box_shadow_spread_tablet=\u201d0px\u201d global_colors_info=\u201d{}\u201d]<br \/>\n[\/et_pb_button][et_pb_button button_url=\u201dhttps:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2019\/07\/Progeria-Handbook-Spanish.pdf\u201d url_new_window=\u201don\u201d button_text=\u201d2. Auflage herunterladen \u2013 Spanisch\u201d admin_label=\u201dSpanisch 2. Auflage\u201d _builder_version=\u201d4.16\u2033 background_layout=\u201ddark\u201d custom_margin=\u201d||10px\u201d z_index_tablet=\u201d500\u2033 button_text_shadow_horizontal_length_tablet=\u201d0px\u201d button_text_shadow_vertical_length_tablet=\u201d0px\u201d button_text_shadow_blur_strength_tablet=\u201d1px\u201d box_shadow_horizontal_tablet=\u201d0px\u201d box_shadow_vertical_tablet=\u201d0px\u201d box_shadow_blur_tablet=\u201d40px\u201d box_shadow_spread_tablet=\u201d0px\u201d global_colors_info=\u201d{}\u201d]<br \/>\n[\/et_pb_button][\/et_pb_column_inner][\/et_pb_row_inner][et_pb_row_inner custom_padding_last_edited=&#8221;on|phone&#8221; disabled_on=&#8221;on|on|off&#8221; _builder_version=&#8221;4.16&#8243; custom_padding=&#8221;|35px|||false|false&#8221; custom_padding_tablet=&#8221;|35px||35px||true&#8221; custom_padding_phone=&#8221;&#8221; animation_direction=&#8221;top&#8221; z_index_tablet=&#8221;500&#8243; global_colors_info=&#8221;{}&#8221;][et_pb_column_inner saved_specialty_column_type=&#8221;3_4&#8243; _builder_version=&#8221;4.16&#8243; custom_padding=&#8221;|||&#8221; global_colors_info=&#8221;{}&#8221; custom_padding__hover=&#8221;|||&#8221;][et_pb_text _builder_version=&#8221;4.27.4&#8243; background_size=&#8221;initial&#8221; background_position=&#8221;top_left&#8221; background_repeat=&#8221;repeat&#8221; z_index_tablet=&#8221;500&#8243; global_colors_info=&#8221;{}&#8221;]<\/p>\n<p>Wenn Sie diese Materialien f\u00fcr Berichte oder Pr\u00e4sentationen verwenden, geben Sie bitte Folgendes an:<br \/>Quelle:\u00a0<strong><em>Das Handbuch zur klinischen Progerie-Behandlung. Ein Leitfaden f\u00fcr Familien und medizinisches Personal von Kindern mit Progerie.<\/em><\/strong><br \/>Copyright 2019 by The Progeria Research Foundation. Alle Rechte vorbehalten.<\/p>\n<p>Wir werden diese Materialien weiterhin aktualisieren, sobald neue Informationen eintreffen. Wenn Sie spezielle medizinische Fragen haben, kontaktieren Sie uns bitte unter (988) 535-2594 oder\u00a0<a href=\"mailto:info@progeriaresearch.org.\">info@progeriaresearch.org.<\/a><\/p>\n<p>Unser Dank gilt allen Kindern und Familien, die an diesen \u00e4u\u00dferst wichtigen Projekten teilnehmen, sowie den medizinischen Betreuern und anderen Experten, die zu diesen Empfehlungen beigetragen haben.<\/p>\n<p>[\/et_pb_text][et_pb_text _builder_version=&#8221;4.27.4&#8243; _module_preset=&#8221;default&#8221; hover_enabled=&#8221;0&#8243; global_colors_info=&#8221;{}&#8221; sticky_enabled=&#8221;0&#8243;]<\/p>\n<p style=\"font-weight: 400;\"><strong>Vielen Dank an unsere freiwilligen \u00dcbersetzer<br \/><\/strong>Ein besonderer Dank geht an Dr. Muneaki Matsuo f\u00fcr die Organisation der \u00dcbersetzung des <em>2<sup>und<\/sup> Ausgabe \u2013 Japanisches Handbuch<\/em>; an Dr. Tadashi Satoh und das medizinische Personal der P\u00e4diatrie der Saga-Universit\u00e4t f\u00fcr ihre Hilfe bei der \u00dcbersetzung; und an Professor Kenji Ihara, Universit\u00e4t Oita, und Dr. Rika Kozaki, Nationales Zentrum f\u00fcr Kindergesundheit und Entwicklung, zum Korrekturlesen.<\/p>\n<p>Unser aufrichtiger Dank und unsere Anerkennung gelten Dr. Daniel Tanure und Dr. Laura Cheib f\u00fcr die Zeit und Energie, die sie in die portugiesische \u00dcbersetzung des Progeria Handbook \u2013 2. Auflage investiert haben.<\/p>\n<p><span>Wir danken Sammy Basso und dem <a href=\"http:\/\/www.progeriaitalia.org\/ita\/index.php\" target=\"_blank\" rel=\"noopener\">Associazione Italiana Progeria Sammy Basso<\/a> f\u00fcr die Organisation und Finanzierung der italienischen \u00dcbersetzung von \u201eThe Progeria Clinical Care Handbook \u2013 2. Ausgabe\u201c und an Elise Treggia f\u00fcr die Zeit und M\u00fche, die sie in die \u00dcbersetzung investiert hat.<\/span><\/p>\n<p><span>Wir danken nochmals Sammy Basso und der <a href=\"http:\/\/www.progeriaitalia.org\/ita\/index.php\" target=\"_blank\" rel=\"noopener\">Associazione Italiana Progeria Sammy Basso<\/a> f\u00fcr die Organisation und Finanzierung der arabischen \u00dcbersetzung des \u201eProgeria Clinical Care Handbook \u2013 2. Ausgabe\u201c, an Elise Treggia f\u00fcr die Koordination mit ihrem \u00dcbersetzernetzwerk und an Sara Anani f\u00fcr ihre wunderbare \u00dcbersetzungsarbeit.<\/span><\/p>\n<p><span>Vielen Dank an<\/span><span>\u00a0Jieun Lee, MD, PhD, und die Mitarbeiter des Inha University Hospital in Incheon, S\u00fcdkorea, die die koreanische \u00dcbersetzung mit Unterst\u00fctzung des koreanischen Ministeriums f\u00fcr Gesundheit und Wohlfahrt und des Korea Health Industry Development Institute erstellt haben.<\/span><\/p>\n<p>[\/et_pb_text][\/et_pb_column_inner][\/et_pb_row_inner][et_pb_row_inner custom_padding_last_edited=\u201don|phone\u201d disabled_on=\u201d||on\u201d admin_label=\u201dZeile (Nur mobil)\u201d _builder_version=\u201d4.16\u2033 custom_padding=\u201d39.4375px|35px|12px||false|false\u201d custom_padding_tablet=\u201d|35px||35px||true\u201d custom_padding_phone=\u201d\u201d animation_direction=\u201dtop\u201d z_index_tablet=\u201d500\u2033 global_colors_info=\u201d{}\u201d][et_pb_column_inner saved_specialty_column_type=\u201d3_4\u2033 _builder_version=\u201d4.16\u2033 custom_padding=\u201d|||\u201d global_colors_info=\u201d{}\u201d custom_padding__hover=\u201d|||\u201d][et_pb_image src=\u201dhttps:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2019\/03\/english-front.jpg\u201d align_tablet=\u201dcenter\u201d align_phone=\u201d\u201d align_last_edited=\u201don|desktop\u201d admin_label=\u201dEnglisches Titelbild (nur f\u00fcr Mobilger\u00e4te)\u201d _builder_version=\u201d4.16\u2033 z_index_tablet=\u201d500\u2033 box_shadow_horizontal_tablet=\u201d0px\u201d box_shadow_vertical_tablet=\u201d0px\u201d box_shadow_blur_tablet=\u201d40px\u201d box_shadow_spread_tablet=\u201d0px\u201d global_colors_info=\u201d{}\u201d]<br \/>\n[\/et_pb_image][et_pb_text admin_label=\u201dText (nur mobil)\u201d _builder_version=\u201d4.16\u2033 background_size=\u201dinitial\u201d background_position=\u201dtop_left\u201d background_repeat=\u201drepeat\u201d z_index_tablet=\u201d500\u2033 global_colors_info=\u201d{}\u201d]<\/p>\n<p>Da die meisten medizinischen Betreuer noch nie ein Kind mit Progerie behandelt haben, stellt sich oft die Frage, wie die Lebensqualit\u00e4t durch t\u00e4gliche Pflege und medizinische Behandlung optimiert werden kann. Um diesem Bedarf gerecht zu werden, ver\u00f6ffentlichte PRF im April 2010 die erste Ausgabe von <em>Das Progerie-Handbuch<\/em>, f\u00fcr Familien, die von Progerie betroffen sind, und ihre \u00c4rzte. Von grundlegenden Gesundheitsfakten \u00fcber Empfehlungen zur t\u00e4glichen Pflege bis hin zu umfassenden Behandlungsrichtlinien hilft dieses 131-seitige Handbuch dabei, viele Fragen von Kindern mit Progerie auf der ganzen Welt zu beantworten.<\/p>\n<p>Im M\u00e4rz 2019 hat PRF jeden Abschnitt der ersten Ausgabe des Handbuchs aktualisiert und bearbeitet. Zu den gr\u00f6\u00dften \u00c4nderungen der zweiten Ausgabe geh\u00f6ren ein neuer Abschnitt \u00fcber Genetik und genetische Beratung f\u00fcr medizinisches Fachpersonal sowie eine F\u00fclle neuer Informationen aus aktuellen klinischen Studien der Progerie-Forschungsgemeinschaft, darunter neue kardiovaskul\u00e4re, neurovaskul\u00e4re und endokrine Informationen sowie Empfehlungen.<\/p>\n<p>&nbsp;<\/p>\n<p>[\/et_pb_text][et_pb_button button_url=\u201dhttps:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2019\/03\/PRF_Handbook_2019_eFile.pdf\u201d url_new_window=\u201don\u201d button_text=\u201d2. Ausgabe herunterladen \u2013 Englisch\u201d admin_label=\u201d2. 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Ausgabe \u2013 Arabisch\u201d _builder_version=\u201d4.21.0\u2033 background_layout=\u201ddark\u201d custom_margin=\u201d||10px\u201d button_text_size_tablet=\u201d18\u2033 button_text_size_phone=\u201d14\u2033 button_text_size_last_edited=\u201don|phone\u201d z_index_tablet=\u201d500\u2033 button_text_shadow_horizontal_length_tablet=\u201d0px\u201d button_text_shadow_vertical_length_tablet=\u201d0px\u201d button_text_shadow_blur_strength_tablet=\u201d1px\u201d box_shadow_horizontal_tablet=\u201d0px\u201d box_shadow_vertical_tablet=\u201d0px\u201d box_shadow_blur_tablet=\u201d40px\u201d box_shadow_spread_tablet=\u201d0px\u201d global_colors_info=\u201d{}\u201d]<br \/>\n[\/et_pb_button][et_pb_button button_url=\u201dhttps:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2019\/07\/Progeria-Handbook-Spanish.pdf\u201d url_new_window=\u201don\u201d button_text=\u201d2. Ausgabe herunterladen \u2013 Spanisch\u201d admin_label=\u201d2. Ausgabe \u2013 Spanisch (nur f\u00fcr Mobilger\u00e4te)\u201d _builder_version=\u201d4.16\u2033 background_layout=\u201ddark\u201d custom_margin=\u201d||10px\u201d button_text_size_tablet=\u201d18\u2033 button_text_size_phone=\u201d14\u2033 button_text_size_last_edited=\u201don|phone\u201d z_index_tablet=\u201d500\u2033 button_text_shadow_horizontal_length_tablet=\u201d0px\u201d button_text_shadow_vertical_length_tablet=\u201d0px\u201d button_text_shadow_blur_strength_tablet=\u201d1px\u201d box_shadow_horizontal_tablet=\u201d0px\u201d box_shadow_vertical_tablet=\u201d0px\u201d box_shadow_blur_tablet=\u201d40px\u201d box_shadow_spread_tablet=\u201d0px\u201d global_colors_info=\u201d{}\u201d]<br \/>\n[\/et_pb_button][et_pb_button button_url=\u201dhttps:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2019\/09\/UPDATED-Japanese-Progeria-Handbook-Edition-2.pdf\u201d url_new_window=\u201don\u201d button_text=\u201d2. Ausgabe herunterladen \u2013 Japanisch\u201d admin_label=\u201d2. Ausgabe \u2013 Japanisch (nur f\u00fcr Mobilger\u00e4te)\u201d _builder_version=\u201d4.16\u2033 background_layout=\u201ddark\u201d custom_margin=\u201d||10px\u201d button_text_size_tablet=\u201d18\u2033 button_text_size_phone=\u201d14\u2033 button_text_size_last_edited=\u201don|phone\u201d z_index_tablet=\u201d500\u2033 button_text_shadow_horizontal_length_tablet=\u201d0px\u201d button_text_shadow_vertical_length_tablet=\u201d0px\u201d button_text_shadow_blur_strength_tablet=\u201d1px\u201d box_shadow_horizontal_tablet=\u201d0px\u201d box_shadow_vertical_tablet=\u201d0px\u201d box_shadow_blur_tablet=\u201d40px\u201d box_shadow_spread_tablet=\u201d0px\u201d global_colors_info=\u201d{}\u201d]<br \/>\n[\/et_pb_button][et_pb_button button_url=\u201dhttps:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2022\/11\/Manual-da-Progeria-2-ed.-Potugues-reduced-size-PDF.pdf\u201d url_new_window=\u201don\u201d button_text=\u201d2. Auflage herunterladen \u2013 Portugiesisch\u201d admin_label=\u201dJapanisch 2. Auflage\u201d _builder_version=\u201d4.18.1\u2033 background_layout=\u201ddark\u201d custom_margin=\u201d||10px\u201d z_index_tablet=\u201d500\u2033 button_text_shadow_horizontal_length_tablet=\u201d0px\u201d button_text_shadow_vertical_length_tablet=\u201d0px\u201d button_text_shadow_blur_strength_tablet=\u201d1px\u201d box_shadow_horizontal_tablet=\u201d0px\u201d box_shadow_vertical_tablet=\u201d0px\u201d box_shadow_blur_tablet=\u201d40px\u201d box_shadow_spread_tablet=\u201d0px\u201d global_colors_info=\u201d{}\u201d]<br \/>\n[\/et_pb_button][et_pb_text admin_label=\u201dText (nur mobil)\u201d _builder_version=\u201d4.16\u2033 background_size=\u201dinitial\u201d background_position=\u201dtop_left\u201d background_repeat=\u201drepeat\u201d z_index_tablet=\u201d500\u2033 global_colors_info=\u201d{}\u201d]<\/p>\n<p>Wenn Sie diese Materialien f\u00fcr Berichte oder Pr\u00e4sentationen verwenden, geben Sie bitte Folgendes an:<br \/>Quelle:&nbsp;<strong><em>Das Progerie-Handbuch; Ein Leitfaden f\u00fcr Familien und Gesundheitsdienstleister von Kindern mit Progerie.<\/em><\/strong><br \/>Copyright 2019 by The Progeria Research Foundation. Alle Rechte vorbehalten.<\/p>\n<p>Wir werden diese Materialien weiterhin aktualisieren, sobald neue Informationen eintreffen. Wenn Sie spezielle medizinische Fragen haben, kontaktieren Sie uns bitte unter (988) 535-2594 oder&nbsp;<a href=\"mailto:info@progeriaresearch.org.\">info@progeriaresearch.org.<\/a><\/p>\n<p>Unser Dank gilt allen Kindern und Familien, die an diesen \u00e4u\u00dferst wichtigen Projekten teilnehmen, sowie den medizinischen Betreuern und anderen Experten, die zu diesen Empfehlungen beigetragen haben.<\/p>\n<p>&nbsp;<\/p>\n<p>[\/et_pb_text][\/et_pb_column_inner][\/et_pb_row_inner][\/et_pb_column][\/et_pb_section][et_pb_section fb_built=\u201d1\u2033 module_class=\u201dfooter\u201d _builder_version=\u201d4.21.0\u2033 background_color=\u201d#29327a\u201d custom_margin=\u201d-2px|||||\u201d custom_padding=\u201d0|0px|0|0px|false|false\u201d z_index_tablet=\u201d500\u2033 border_width_top=\u201d12px\u201d border_color_top=\u201d#00b2e2\u2033 global_module=\u201d133\u2033 locked=\u201doff\u201d global_colors_info=\u201d{}\u201d][et_pb_row column_structure=\u201d1_4,1_4,1_2\u2033 make_equal=\u201don\u201d module_class=\u201d et_pb_row_fullwidth\u201d _builder_version=\u201d4.16\u2033 width=\u201d89%\u201d width_tablet=\u201d80%\u201d width_phone=\u201d\u201d width_last_edited=\u201don|desktop\u201d max_width=\u201d89%\u201d max_width_tablet=\u201d80%\u201d max_width_phone=\u201d\u201d max_width_last_edited=\u201dauf|Desktop\u201d z_index_tablet=\u201d500\u2033 make_fullwidth=\u201dan\u201d width_unit=\u201daus\u201d custom_width_percent=\u201d100%\u201d global_colors_info=\u201d{}\u201d][et_pb_column type=\u201d1_4\u2033 _builder_version=\u201d4.16\u2033 custom_padding=\u201d|||\u201d global_colors_info=\u201d{}\u201d custom_padding__hover=\u201d|||\u201d][et_pb_cta button_url=\u201dhttps:\/\/lp.constantcontactpages.com\/sl\/88gWWwz\u201d button_text=\u201dJetzt anmelden\u201d admin_label=\u201dF\u00fcr Updates anmelden\u201d module_class=\u201dsign-btn\u201d _builder_version=\u201d4.27.4\u2033 header_font_size=\u201d25px\u201d background_color=\u201d#29327a\u201d animation_style=\u201dslide\u201d animation_direction=\u201dleft\u201d animation_intensity_slide=\u201d25%\u201d link_option_url=\u201dhttps:\/\/lp.constantcontactpages.com\/sl\/88gWWwz\u201d header_font_size_tablet=\u201d\u201d header_font_size_phone=\u201d30px\u201d header_font_size_last_edited=\u201dan|desktop\u201d z_index_tablet=\u201d500\u2033 border_radii=\u201dan|25px|25px|25px|25px\u201d global_colors_info=\u201d{}\u201d button_bg_color__hover_enabled=\u201dan\u201d button_bg_color__hover=\u201d#8fd2ed\u201d button_border_color__hover_enabled=\u201dan\u201d]<\/p>\n<h2>Melden Sie sich an<\/h2>\n<h2>f\u00fcr unsere<\/h2>\n<h2>Neuigkeiten!<\/h2>\n<p>[\/et_pb_cta][\/et_pb_column][et_pb_column type=\u201d1_4\u2033 _builder_version=\u201d4.16\u2033 custom_padding=\u201d|||\u201d global_colors_info=\u201d{}\u201d custom_padding__hover=\u201d|||\u201d][et_pb_cta button_url=\u201dhttps:\/\/progeriaresearch.donorsupport.co\/-\/XZHJVWZR\u201d button_text=\u201dJetzt spenden\u201d admin_label=\u201dGemeinsam werden wir die Heilung finden!\u201d module_class=\u201dsign-btn\u201d _builder_version=\u201d4.16\u2033 header_font_size=\u201d25px\u201d background_color=\u201d#29327a\u201d animation_style=\u201dslide\u201d animation_direction=\u201dleft\u201d animation_intensity_slide=\u201d25%\u201d header_font_size_tablet=\u201d\u201d header_font_size_phone=\u201d30px\u201d header_font_size_last_edited=\u201don|desktop\u201d body_font_size_tablet=\u201d\u201d body_font_size_phone=\u201d\u201d body_font_size_last_edited=\u201don|desktop\u201d z_index_tablet=\u201d500\u2033 border_radii=\u201don|25px|25px|25px|25px\u201d global_colors_info=\u201d{}\u201d button_bg_color__hover_enabled=\u201don\u201d button_bg_color__hover=\u201d#8fd2ed\u201d button_border_color__hover_enabled=\u201dein\u201d]<\/p>\n<h2>Gemeinsam<\/h2>\n<h2><em>WILLE<\/em><\/h2>\n<h2>Finde die Heilung!<\/h2>\n<p>[\/et_pb_cta][\/et_pb_column][et_pb_column type=\u201d1_2\u2033 _builder_version=\u201d4.16\u2033 custom_padding=\u201d|||\u201d global_colors_info=\u201d{}\u201d custom_padding__hover=\u201d|||\u201d][et_pb_image src=\u201dhttps:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2025\/05\/2025-strip-for-website-footer-no-years.png\u201d title_text=\u201d2025-Streifen f\u00fcr Website-Fu\u00dfzeile ohne Jahresangaben\u201d _builder_version=\u201d4.27.4\u2033 _module_preset=\u201ddefault\u201d custom_margin=\u201d35px||||false|false\u201d global_colors_info=\u201d{}\u201d][\/et_pb_image][\/et_pb_column][\/et_pb_row][\/et_pb_section]<\/p>","protected":false},"excerpt":{"rendered":"<p>[et_pb_section fb_built=&#8221;1&#8243; fullwidth=&#8221;on&#8221; disabled_on=&#8221;off|off|off&#8221; _builder_version=&#8221;4.16&#8243; border_width_bottom=&#8221;55px&#8221; border_color_bottom=&#8221;#29327a&#8221; locked=&#8221;off&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_fullwidth_header _builder_version=&#8221;4.24.3&#8243; title_font=&#8221;||||||||&#8221; title_font_size=&#8221;55&#8243; background_color=&#8221;#29327a&#8221; background_image=&#8221;https:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2019\/05\/parents-doctors-header-v4.jpg&#8221; custom_padding=&#8221;9vw||9vw||true&#8221; custom_padding_tablet=&#8221;&#8221; custom_padding_phone=&#8221;|56px||&#8221; custom_padding_last_edited=&#8221;on|desktop&#8221; title_font_size_tablet=&#8221;45px&#8221; title_font_size_phone=&#8221;40px&#8221; title_font_size_last_edited=&#8221;on|phone&#8221; z_index_tablet=&#8221;500&#8243; custom_css_main_element=&#8221;background-position: center 18% !important;&#8221; global_colors_info=&#8221;{}&#8221;] Progeria Clinical Care Handbook &nbsp; [\/et_pb_fullwidth_header][\/et_pb_section][et_pb_section fb_built=&#8221;1&#8243; use_custom_gutter=&#8221;on&#8221; gutter_width=&#8221;1&#8243; specialty=&#8221;on&#8221; padding_left_1=&#8221;35px&#8221; padding_left_2=&#8221;35px&#8221; padding_2_tablet=&#8221;|||0px&#8221; padding_2_phone=&#8221;|||0px&#8221; padding_2_last_edited=&#8221;on|desktop&#8221; module_class_1=&#8221;sidebar-secondary-nav&#8221; module_class=&#8221;handprint-bg&#8221; _builder_version=&#8221;4.16&#8243; background_image=&#8221;https:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2019\/04\/blue-handprint-only.png&#8221; parallax=&#8221;on&#8221; parallax_method=&#8221;off&#8221; inner_width=&#8221;100%&#8221; inner_max_width=&#8221;100%&#8221; custom_padding=&#8221;0|0px|54px|0px|false|false&#8221; z_index_tablet=&#8221;500&#8243; border_width_top=&#8221;10px&#8221; border_color_top=&#8221;#8fd2ed&#8221; use_custom_width=&#8221;on&#8221; [&hellip;]<\/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<img class=\"alignright size-full wp-image-4629\" src=\"https:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2019\/03\/english-front.jpg\" alt=\"\" width=\"200\" height=\"257\" \/>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 <em>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<img src=\"https:\/\/www.progeriaresearch.org\/assets\/images\/iconPDF.gif\" alt=\"\" width=\"34\" height=\"20\" \/> <a href=\"https:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2019\/03\/PRF_Handbook_2019_eFile.pdf\" target=\"_blank\" rel=\"noopener noreferrer\">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:\u00a0<strong><em>The 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\u00a0<a href=\"mailto:info@progeriaresearch.org.\">info@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<hr \/>\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<img src=\"https:\/\/www.progeriaresearch.org\/assets\/images\/iconPDF.gif\" alt=\"\" width=\"34\" height=\"20\" \/> <a href=\"https:\/\/www.progeriaresearch.org\/assets\/files\/pdf\/Progeria_Book_r2.pdf\" target=\"_blank\" rel=\"noopener noreferrer\">Click here<\/a> to download the Portuguese version.\r\n\r\n<img src=\"https:\/\/www.progeriaresearch.org\/assets\/images\/iconPDF.gif\" alt=\"\" width=\"34\" height=\"20\" \/> <a href=\"https:\/\/www.progeriaresearch.org\/assets\/files\/pdf\/Progeria_Book_r2.pdf\" target=\"_blank\" rel=\"noopener noreferrer\">Clique aqui<\/a> para fazer o download da vers\u00e3o em Portugu\u00eas.\r\n\r\n<hr \/>\r\n\r\n<a href=\"https:\/\/www.progeriaresearch.org\/assets\/files\/pdf\/PRF%20Handbook%20Spanish.pdf\"><img src=\"https:\/\/www.progeriaresearch.org\/assets\/images\/iconPDF.gif\" alt=\"\" width=\"34\" height=\"20\" \/> <\/a><a href=\"https:\/\/www.progeriaresearch.org\/assets\/files\/pdf\/PRF%20Handbook%20Spanish.pdf\" target=\"_blank\" rel=\"noopener noreferrer\">Click here<\/a> to download the Spanish version.\r\n\r\n<a href=\"https:\/\/www.progeriaresearch.org\/assets\/files\/pdf\/PRF%20Handbook%20Spanish.pdf\"><img src=\"https:\/\/www.progeriaresearch.org\/assets\/images\/iconPDF.gif\" alt=\"\" width=\"34\" height=\"20\" \/> <\/a><a href=\"https:\/\/www.progeriaresearch.org\/assets\/files\/pdf\/PRF%20Handbook%20Spanish.pdf\" target=\"_blank\" rel=\"noopener noreferrer\">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":"<!-- This site is optimized with the Yoast SEO plugin v26.8 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>patient handbook | The 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