{"id":22155,"date":"2020-04-23T23:04:04","date_gmt":"2020-04-23T21:04:04","guid":{"rendered":"https:\/\/www.acmah.org\/enllacos-dinteres\/"},"modified":"2024-11-21T12:55:30","modified_gmt":"2024-11-21T10:55:30","slug":"enlaces-de-interes","status":"publish","type":"page","link":"https:\/\/www.acmah.org\/es\/enlaces-de-interes\/","title":{"rendered":"Enlaces de inter\u00e9s"},"content":{"rendered":"

[et_pb_section fb_built=\u00bb1″ _builder_version=\u00bb4.16″ locked=\u00bboff\u00bb global_colors_info=\u00bb{}\u00bb][et_pb_row column_structure=\u00bb3_5,2_5″ _builder_version=\u00bb4.16″ max_width=\u00bb80%\u00bb custom_margin=\u00bb||0px||false|false\u00bb custom_padding=\u00bb||3px|||\u00bb animation_style=\u00bbfade\u00bb global_colors_info=\u00bb{}\u00bb][et_pb_column type=\u00bb3_5″ _builder_version=\u00bb4.16″ global_colors_info=\u00bb{}\u00bb][et_pb_text _builder_version=\u00bb4.27.3″ text_text_color=\u00bb#000000″ text_font_size=\u00bb16px\u00bb text_line_height=\u00bb1.6em\u00bb header_2_font=\u00bb|700|||||||\u00bb header_2_text_color=\u00bb#b70d1d\u00bb header_2_line_height=\u00bb1.8em\u00bb header_3_font=\u00bb|600|||||||\u00bb header_3_text_color=\u00bb#b70d1d\u00bb header_3_font_size=\u00bb20px\u00bb header_3_line_height=\u00bb1.6em\u00bb custom_margin=\u00bb||50px||false|false\u00bb custom_padding=\u00bb|||20px|false|false\u00bb hover_enabled=\u00bb0″ border_width_left=\u00bb4px\u00bb border_color_left=\u00bb#9c8688″ global_colors_info=\u00bb{}\u00bb locked=\u00bboff\u00bb sticky_enabled=\u00bb0″]<\/p>\n

Enlaces de inter\u00e9s<\/h2>\n

Herramienta de Decisiones Compartidas en la Enfermedad de Huntington de la Generalitat de Catalunya<\/h3>\n

Esta herramienta te ayudar\u00e1 a conocer en qu\u00e9 consiste la enfermedad de Huntington y qu\u00e9 impacto puede tener en la vida de las personas diagnosticadas y en sus familiares. Va dirigida a aquellas personas con antecedentes familiares de enfermedad de Huntington que quieran reflexionar sobre el asesoramiento gen\u00e9tico de la enfermedad y tambi\u00e9n a los profesionales de la salud que quieran iniciar un proceso de toma de decisiones compartidas con las personas a las que acompa\u00f1an.<\/p>\n

La herramienta incluye informaci\u00f3n descriptiva sobre el curso de la enfermedad, su diagn\u00f3stico y las medidas terap\u00e9uticas existentes. Tambi\u00e9n se detallan el tipo de herencia gen\u00e9tica de la enfermedad, as\u00ed como las opciones de asesoramiento gen\u00e9tico para personas en riesgo y en el \u00e1mbito de la planificaci\u00f3n de la descendencia. Por \u00faltimo, se presentan los aspectos a valorar antes de tomar una decisi\u00f3n informada sobre el asesoramiento gen\u00e9tico.<\/p>\n

 <\/p>\n

Herramienta de Decisiones Compartidas en la Enfermedad de Huntington<\/strong> \/\/ www.decisionscompartides.gencat.cat\/es\/decidir-sobre\/malaltia-huntington\/index.html<\/a><\/span><\/span>[\/et_pb_text][et_pb_text _builder_version=\u00bb4.27.3″ text_text_color=\u00bb#000000″ text_font_size=\u00bb16px\u00bb text_line_height=\u00bb1.6em\u00bb header_2_font=\u00bb|700|||||||\u00bb header_2_text_color=\u00bb#b70d1d\u00bb header_2_line_height=\u00bb1.8em\u00bb header_3_font=\u00bb|600|||||||\u00bb header_3_text_color=\u00bb#b70d1d\u00bb header_3_font_size=\u00bb20px\u00bb header_3_line_height=\u00bb1.6em\u00bb custom_margin=\u00bb||50px||false|false\u00bb custom_padding=\u00bb|||20px|false|false\u00bb border_width_left=\u00bb4px\u00bb border_color_left=\u00bb#9c8688″ global_colors_info=\u00bb{}\u00bb locked=\u00bboff\u00bb]<\/p>\n

Entitades de Enfermedad de Huntington<\/h3>\n

Federaci\u00f3n Espa\u00f1ola de Personas Afectadas por la Enfermedad de Huntington (FEPAEH)<\/strong> \/\/ www.fepaeh.org<\/a><\/span><\/span><\/p>\n

European Huntington Association<\/strong> \/\/ www.eurohuntington.org<\/a><\/span><\/span><\/p>\n

Grup Europeu de la Malaltia de Huntington<\/strong> \/\/ www.ehdn.org<\/a><\/span><\/span><\/p>\n

Projecte Europeu Moving Forward<\/strong> \/\/\u00a0 www.ehamovingforward.org<\/a><\/span><\/span><\/p>\n

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Otras Federaciones y Entidades Colaboradoras<\/h3>\n

Plataforma de Enfermedades Minoritarias de Catalu\u00f1a<\/strong> \/\/ www.fundaciotorrentfarnell.org<\/a><\/span><\/span><\/span><\/p>\n

Federaci\u00f3n Espa\u00f1ola de Enfermedades Raras (FEDER)<\/span><\/strong> \/\/ www.enfermedades-raras.org<\/a><\/span><\/span><\/span><\/p>\n

Europea de Enfermedades Raras (EURORDIS)<\/span><\/strong> \/\/ www.eurordis.org<\/a><\/span><\/span><\/span><\/p>\n

Federaci\u00f3n de Entidades de Personas con Discapacidad (Federaci\u00f3n ECOM)<\/span><\/strong> \/\/ www.ecom.cat<\/a><\/span><\/span><\/span><\/p>\n

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Enlaces de inter\u00e9s Herramienta de Decisiones Compartidas en la Enfermedad de Huntington de la Generalitat de Catalunya Esta herramienta te ayudar\u00e1 a conocer en qu\u00e9 consiste la enfermedad de Huntington y qu\u00e9 impacto puede tener en la vida de las personas diagnosticadas y en sus familiares. Va dirigida a aquellas personas con antecedentes familiares de […]<\/p>\n","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":"","_et_gb_content_width":"","footnotes":""},"dipi_cpt_category":[],"class_list":["post-22155","page","type-page","status-publish","hentry"],"yoast_head":"\nEnlaces de inter\u00e9s - ACMAH<\/title>\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.acmah.org\/enllacos-dinteres\/\" \/>\n<meta property=\"og:locale\" content=\"es_ES\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Enlaces de inter\u00e9s - ACMAH\" \/>\n<meta property=\"og:description\" content=\"Enlaces de inter\u00e9s Herramienta de Decisiones Compartidas en la Enfermedad de Huntington de la Generalitat de Catalunya Esta herramienta te ayudar\u00e1 a conocer en qu\u00e9 consiste la enfermedad de Huntington y qu\u00e9 impacto puede tener en la vida de las personas diagnosticadas y en sus familiares. 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