{"id":10237,"date":"2023-02-28T16:59:55","date_gmt":"2023-02-28T19:59:55","guid":{"rendered":"https:\/\/capivari.sp.gov.br\/portal\/?p=10237"},"modified":"2023-02-28T16:59:55","modified_gmt":"2023-02-28T19:59:55","slug":"capivari-participa-de-encontro-de-gestores-e-instituicoes-no-dia-mundial-das-doencas-raras","status":"publish","type":"post","link":"https:\/\/capivari.sp.gov.br\/portal\/capivari-participa-de-encontro-de-gestores-e-instituicoes-no-dia-mundial-das-doencas-raras\/","title":{"rendered":"Capivari participa de Encontro de Gestores e Institui\u00e7\u00f5es no Dia Mundial das Doen\u00e7as Raras"},"content":{"rendered":"<p align=\"justify\"><span style=\"color: #262626\"><span style=\"font-family: Liberation Serif, serif\"><span style=\"font-size: medium\">A Secret\u00e1ria dos Direitos da Pessoa com Defici\u00eancia e Mobilidade Reduzida de Capivari, Manuela Maschietto Gon\u00e7alves Albini, <\/span><\/span><\/span><span style=\"color: #262626\"><span style=\"font-family: Liberation Serif, serif\"><span style=\"font-size: medium\">esteve presente na manh\u00e3 desta ter\u00e7a-feira, dia 28, <\/span><\/span><\/span><span style=\"color: #262626\"><span style=\"font-family: Liberation Serif, serif\"><span style=\"font-size: medium\">data que marca o Dia <\/span><\/span><\/span><span style=\"color: #262626\"><span style=\"font-family: Liberation Serif, serif\"><span style=\"font-size: medium\">Mundial<\/span><\/span><\/span><span style=\"color: #262626\"><span style=\"font-family: Liberation Serif, serif\"><span style=\"font-size: medium\"> da<\/span><\/span><\/span><span style=\"color: #262626\"><span style=\"font-family: Liberation Serif, serif\"><span style=\"font-size: medium\">s<\/span><\/span><\/span><span style=\"color: #262626\"><span style=\"font-family: Liberation Serif, serif\"><span style=\"font-size: medium\"> Doen\u00e7a<\/span><\/span><\/span><span style=\"color: #262626\"><span style=\"font-family: Liberation Serif, serif\"><span style=\"font-size: medium\">s<\/span><\/span><\/span><span style=\"color: #262626\"><span style=\"font-family: Liberation Serif, serif\"><span style=\"font-size: medium\"> Rara, <\/span><\/span><\/span><span style=\"color: #262626\"><span style=\"font-family: Liberation Serif, serif\"><span style=\"font-size: medium\">no \u201c1\u00ba Simp\u00f3sio Estadual de Doen\u00e7as Raras\u201d \u2013 Encontro de Gestores e Institui\u00e7\u00f5es, <\/span><\/span><\/span><span style=\"color: #262626\"><span style=\"font-family: Liberation Serif, serif\"><span style=\"font-size: medium\">em<\/span><\/span><\/span><span style=\"color: #262626\"><span style=\"font-family: Liberation Serif, serif\"><span style=\"font-size: medium\"> S\u00e3o Paulo, promovido pela Secretaria de Estado dos Direitos da Pessoa com Defici\u00eancia. Temas como diagn\u00f3stico, reabilita\u00e7\u00e3o e direitos ao centro da discuss\u00e3o, foram abordados no Simp\u00f3sio.<\/span><\/span><\/span><\/p>\n<p><span style=\"font-family: Liberation Serif, serif\"><span style=\"font-size: medium\"><span style=\"color: #262626\">As doen\u00e7as raras podem ser definidas como aquela que afeta at\u00e9 65 pessoas em cada 100 mil, ou seja, 1,3 pessoas para cada <\/span><span style=\"color: #262626\">dois<\/span> <span style=\"color: #262626\">mil<\/span><span style=\"color: #262626\"> indiv\u00edduos. S\u00e3o classificadas de acordo com os <\/span><span style=\"color: #262626\">quatro<\/span><span style=\"color: #262626\"> principais fatores: incid\u00eancia, raridade, gravidade e diversidade. No Brasil, estima-se que cerca de treze milh\u00f5es de pessoas possuem alguma doen\u00e7a rara.<\/span><\/span><\/span><\/p>\n<p><span style=\"font-family: Liberation Serif, serif\"><span style=\"font-size: medium\"><span style=\"color: #262626\">Cerca de 75% das doen\u00e7as raras afetam crian\u00e7as,\u00a0manifestam-se no in\u00edcio da vida e acometem pacientes de at\u00e9 <\/span><span style=\"color: #262626\">5<\/span><span style=\"color: #262626\"> anos de idade. Muitas delas s\u00e3o cr\u00f4nicas, progressivas, degenerativas e podem levar \u00e0 morte. A Triagem Neonatal \u00e9 capaz de detectar algumas dessas doen\u00e7as antes que se manifestem.<\/span><\/span><\/span><\/p>\n<p><span style=\"font-family: Liberation Serif, serif\"><span style=\"font-size: medium\"><span style=\"color: #262626\">Em torno de 20% das doen\u00e7as raras adv\u00eam de causas ambientais, infecciosas e imunol\u00f3gicas e 80% s\u00e3o decorrentes de fatores gen\u00e9ticos. Por serem raras, o acesso ao diagn\u00f3stico e \u00e0 terapia adequada ainda s\u00e3o dificuldades enfrentadas pelos pacientes.<\/span><\/span><\/span><\/p>\n<p><span style=\"font-family: Liberation Serif, serif\"><span style=\"font-size: medium\"><span style=\"color: #262626\">A Portaria n\u00ba 199, de 30 de janeiro de 2014, instituiu a Pol\u00edtica Nacional de Aten\u00e7\u00e3o Integral \u00e0s Pessoas com Doen\u00e7as Raras, aprovou as Diretrizes para Aten\u00e7\u00e3o Integral \u00e0s Pessoas com Doen\u00e7as Raras no \u00e2mbito do Sistema \u00danico de Sa\u00fade (SUS) e instituiu incentivos financeiros de custeio.<\/span><\/span><\/span><\/p>\n<p><span style=\"color: #262626\">\u201c<span style=\"font-family: Liberation Serif, serif\"><span style=\"font-size: medium\">\u00c9 importante a nossa participa\u00e7\u00e3o nesse evento, para aumentarmos o conhecimento nas diversas \u00e1reas em que atuamos, como na prote\u00e7\u00e3o, assist\u00eancia e diagn\u00f3stico, triagem neonatal, cuidado e reabilita\u00e7\u00e3o para a qualidade de vida da pessoa com Doen\u00e7a Rara e tamb\u00e9m leis e direitos. Dessa maneira, pretendemos ter acesso \u00e0s informa\u00e7\u00f5es de locais para tratamento e formas de encaminhamento e tamb\u00e9m estruturar melhores servi\u00e7os \u00e0 popula\u00e7\u00e3o com Doen\u00e7as Raras\u201d, <\/span><\/span><\/span><span style=\"color: #262626\"><span style=\"font-family: Liberation Serif, serif\"><span style=\"font-size: medium\">afirma a <\/span><\/span><\/span><span style=\"color: #262626\"><span style=\"font-family: Liberation Serif, serif\"><span style=\"font-size: medium\"> Secret\u00e1ria dos Direitos da Pessoa com Defici\u00eancia e Mobilidade Reduzida de Capivari, Manuela Maschietto Gon\u00e7alves Albini, <\/span><\/span><\/span><span style=\"color: #262626\"><span style=\"font-family: Liberation Serif, serif\"><span style=\"font-size: medium\">ela ainda comenta que <\/span><\/span><\/span><span style=\"color: #262626\"><span style=\"font-family: Liberation Serif, serif\"><span style=\"font-size: medium\">\u201cO <\/span><\/span><\/span><span style=\"color: #000000\"><span style=\"font-family: Liberation Serif, serif\"><span style=\"font-size: medium\">teste do pezinho,<\/span><\/span><\/span><b> <\/b><span style=\"color: #000000\"><span style=\"font-family: Times New Roman, serif\"><span style=\"font-size: medium\"><span style=\"font-family: Liberation Serif, serif\">realizado preferencialmente entre o segundo e quinto dia de nascimento do beb\u00ea,<\/span><\/span><\/span><\/span><b> <\/b><span style=\"color: #000000\"><span style=\"font-family: Liberation Serif, serif\"><span style=\"font-size: medium\">\u00e9 um exame simples e muito<\/span><\/span><\/span><b> <\/b><span style=\"color: #000000\"><span style=\"font-family: Times New Roman, serif\"><span style=\"font-size: medium\"><span style=\"font-family: Liberation Serif, serif\">importante, pois \u00e9 capaz de detectar de forma precoce diversos problemas de sa\u00fade, inclusive doen\u00e7as raras<\/span><\/span><\/span><\/span><span style=\"color: #000000\"><span style=\"font-family: Liberation Serif, serif\"><span style=\"font-size: medium\"><b>.\u201d<\/b><\/span><\/span><\/span><\/p>\n<p><span style=\"font-family: Liberation Serif, serif\"><span style=\"font-size: medium\">A<\/span><\/span><span style=\"font-family: Liberation Serif, serif\"><span style=\"font-size: medium\"> Secretaria da Pessoa com Defici\u00eancia e Mobilidade Reduzida,<\/span><\/span> <span style=\"font-family: Liberation Serif, serif\"><span style=\"font-size: medium\">fica na<\/span><\/span><span style=\"font-family: Liberation Serif, serif\"><span style=\"font-size: medium\"> Rua da Constitui\u00e7\u00e3o, <\/span><\/span><span style=\"font-family: Liberation Serif, serif\"><span style=\"font-size: medium\">n\u00ba <\/span><\/span><span style=\"font-family: Liberation Serif, serif\"><span style=\"font-size: medium\">123, no bairro P\u00e3o de A\u00e7\u00facar. <\/span><\/span><span style=\"font-family: Liberation Serif, serif\"><span style=\"font-size: medium\">O atendimento \u00e9 <\/span><\/span><span style=\"font-family: Liberation Serif, serif\"><span style=\"font-size: medium\">das 8h30 \u00e0s <\/span><\/span><span style=\"font-family: Liberation Serif, serif\"><span style=\"font-size: medium\">11h30 e das 13h30 \u00e0s <\/span><\/span><span style=\"font-family: Liberation Serif, serif\"><span style=\"font-size: medium\">16h30, de segunda<\/span><\/span><span style=\"font-family: Liberation Serif, serif\"><span style=\"font-size: medium\">s-feiras<\/span><\/span><span style=\"font-family: Liberation Serif, serif\"><span style=\"font-size: medium\"> a<\/span><\/span><span style=\"font-family: Liberation Serif, serif\"><span style=\"font-size: medium\">s<\/span><\/span><span style=\"font-family: Liberation Serif, serif\"><span style=\"font-size: medium\"> sexta<\/span><\/span><span style=\"font-family: Liberation Serif, serif\"><span style=\"font-size: medium\">s<\/span><\/span><span style=\"font-family: Liberation Serif, serif\"><span style=\"font-size: medium\">-feira<\/span><\/span><span style=\"font-family: Liberation Serif, serif\"><span style=\"font-size: medium\">s<\/span><\/span><span style=\"font-family: Liberation Serif, serif\"><span style=\"font-size: medium\">. <\/span><\/span><span style=\"font-family: Liberation Serif, serif\"><span style=\"font-size: medium\">O telefone da Secretaria \u00e9 o <\/span><\/span><span style=\"font-family: Liberation Serif, serif\"><span style=\"font-size: medium\">(19) 3491-1314.<\/span><\/span><\/p>\n","protected":false},"excerpt":{"rendered":"<p>A Secret\u00e1ria dos Direitos da Pessoa com Defici\u00eancia e Mobilidade Reduzida de Capivari, Manuela Maschietto Gon\u00e7alves Albini, esteve presente na manh\u00e3 desta ter\u00e7a-feira, dia 28, data que marca o Dia Mundial das Doen\u00e7as Rara, no \u201c1\u00ba Simp\u00f3sio Estadual de Doen\u00e7as Raras\u201d \u2013 Encontro de Gestores e Institui\u00e7\u00f5es, em S\u00e3o Paulo, promovido pela Secretaria de Estado [&hellip;]<\/p>\n","protected":false},"author":9,"featured_media":10238,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"ocean_post_layout":"","ocean_both_sidebars_style":"","ocean_both_sidebars_content_width":0,"ocean_both_sidebars_sidebars_width":0,"ocean_sidebar":"","ocean_second_sidebar":"","ocean_disable_margins":"enable","ocean_add_body_class":"","ocean_shortcode_before_top_bar":"","ocean_shortcode_after_top_bar":"","ocean_shortcode_before_header":"","ocean_shortcode_after_header":"","ocean_has_shortcode":"","ocean_shortcode_after_title":"","ocean_shortcode_before_footer_widgets":"","ocean_shortcode_after_footer_widgets":"","ocean_shortcode_before_footer_bottom":"","ocean_shortcode_after_footer_bottom":"","ocean_display_top_bar":"default","ocean_display_header":"default","ocean_header_style":"","ocean_center_header_left_menu":"","ocean_custom_header_template":"","ocean_custom_logo":0,"ocean_custom_retina_logo":0,"ocean_custom_logo_max_width":0,"ocean_custom_logo_tablet_max_width":0,"ocean_custom_logo_mobile_max_width":0,"ocean_custom_logo_max_height":0,"ocean_custom_logo_tablet_max_height":0,"ocean_custom_logo_mobile_max_height":0,"ocean_header_custom_menu":"","ocean_menu_typo_font_family":"","ocean_menu_typo_font_subset":"","ocean_menu_typo_font_size":0,"ocean_menu_typo_font_size_tablet":0,"ocean_menu_typo_font_size_mobile":0,"ocean_menu_typo_font_size_unit":"px","ocean_menu_typo_font_weight":"","ocean_menu_typo_font_weight_tablet":"","ocean_menu_typo_font_weight_mobile":"","ocean_menu_typo_transform":"","ocean_menu_typo_transform_tablet":"","ocean_menu_typo_transform_mobile":"","ocean_menu_typo_line_height":0,"ocean_menu_typo_line_height_tablet":0,"ocean_menu_typo_line_height_mobile":0,"ocean_menu_typo_line_height_unit":"","ocean_menu_typo_spacing":0,"ocean_menu_typo_spacing_tablet":0,"ocean_menu_typo_spacing_mobile":0,"ocean_menu_typo_spacing_unit":"","ocean_menu_link_color":"","ocean_menu_link_color_hover":"","ocean_menu_link_color_active":"","ocean_menu_link_background":"","ocean_menu_link_hover_background":"","ocean_menu_link_active_background":"","ocean_menu_social_links_bg":"","ocean_menu_social_hover_links_bg":"","ocean_menu_social_links_color":"","ocean_menu_social_hover_links_color":"","ocean_disable_title":"default","ocean_disable_heading":"default","ocean_post_title":"","ocean_post_subheading":"","ocean_post_title_style":"","ocean_post_title_background_color":"","ocean_post_title_background":0,"ocean_post_title_bg_image_position":"","ocean_post_title_bg_image_attachment":"","ocean_post_title_bg_image_repeat":"","ocean_post_title_bg_image_size":"","ocean_post_title_height":0,"ocean_post_title_bg_overlay":0.5,"ocean_post_title_bg_overlay_color":"","ocean_disable_breadcrumbs":"default","ocean_breadcrumbs_color":"","ocean_breadcrumbs_separator_color":"","ocean_breadcrumbs_links_color":"","ocean_breadcrumbs_links_hover_color":"","ocean_display_footer_widgets":"default","ocean_display_footer_bottom":"default","ocean_custom_footer_template":"","ocean_post_oembed":"","ocean_post_self_hosted_media":"","ocean_post_video_embed":"","ocean_link_format":"","ocean_link_format_target":"self","ocean_quote_format":"","ocean_quote_format_link":"post","ocean_gallery_link_images":"off","ocean_gallery_id":[],"footnotes":""},"categories":[4,5,26],"tags":[],"class_list":["post-10237","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-destaque","category-geral","category-pessoa-com-deficiencia-da-cidadania-e-da-mulher","entry","has-media"],"yoast_head":"<!-- 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