{"id":17765,"date":"2020-03-30T09:41:38","date_gmt":"2020-03-30T09:41:38","guid":{"rendered":"https:\/\/mjn.cat\/?p=17765"},"modified":"2026-11-11T11:53:03","modified_gmt":"2026-11-11T10:53:03","slug":"raros-no","status":"publish","type":"post","link":"https:\/\/mjn.cat\/de\/guerreros\/raros-no\/","title":{"rendered":"Raros no"},"content":{"rendered":"[vc_row type=“in_container“ full_screen_row_position=“middle“ column_margin=“default“ column_direction=“default“ column_direction_tablet=“default“ column_direction_phone=“default“ scene_position=“center“ text_color=“dark“ text_align=“left“ row_border_radius=“none“ row_border_radius_applies=“bg“ overlay_strength=“0.3″ gradient_direction=“left_to_right“ shape_divider_position=“bottom“ bg_image_animation=“none“][vc_column column_padding=“padding-5-percent“ column_padding_tablet=“inherit“ column_padding_phone=“inherit“ column_padding_position=“left-right“ background_color_opacity=“1″ background_hover_color_opacity=“1″ column_shadow=“none“ column_border_radius=“none“ column_link_target=“_self“ gradient_direction=“left_to_right“ overlay_strength=“0.3″ width=“1\/1″ tablet_width_inherit=“default“ tablet_text_alignment=“default“ phone_text_alignment=“default“ column_border_width=“none“ column_border_style=“solid“ bg_image_animation=“none“][vc_row_inner column_margin=“default“ column_direction=“default“ column_direction_tablet=“default“ column_direction_phone=“default“ text_align=“left“][vc_column_inner column_padding=“padding-10-percent“ column_padding_tablet=“inherit“ column_padding_phone=“inherit“ column_padding_position=“left-right“ background_color_opacity=“1″ background_hover_color_opacity=“1″ column_shadow=“none“ column_border_radius=“none“ column_link_target=“_self“ gradient_direction=“left_to_right“ overlay_strength=“0.3″ width=“1\/4″ tablet_width_inherit=“default“ column_border_width=“none“ column_border_style=“solid“ bg_image_animation=“none“][\/vc_column_inner][vc_column_inner column_padding=“no-extra-padding“ column_padding_tablet=“inherit“ column_padding_phone=“inherit“ column_padding_position=“all“ background_color_opacity=“1″ background_hover_color_opacity=“1″ column_shadow=“none“ column_border_radius=“none“ column_link_target=“_self“ gradient_direction=“left_to_right“ overlay_strength=“0.3″ width=“1\/2″ tablet_width_inherit=“default“ column_border_width=“none“ column_border_style=“solid“ bg_image_animation=“none“][vc_column_text]\n

Un art\u00edculo de nuestra colaboradora\u00a0Irene Tarrag\u00f3<\/a><\/span><\/p>\n[\/vc_column_text][\/vc_column_inner][vc_column_inner column_padding=“no-extra-padding“ column_padding_tablet=“inherit“ column_padding_phone=“inherit“ column_padding_position=“all“ background_color_opacity=“1″ background_hover_color_opacity=“1″ column_shadow=“none“ column_border_radius=“none“ column_link_target=“_self“ gradient_direction=“left_to_right“ overlay_strength=“0.3″ width=“1\/4″ tablet_width_inherit=“default“ column_border_width=“none“ column_border_style=“solid“ bg_image_animation=“none“][\/vc_column_inner][\/vc_row_inner][\/vc_column][\/vc_row][vc_row type=“in_container“ full_screen_row_position=“middle“ column_margin=“default“ column_direction=“default“ column_direction_tablet=“default“ column_direction_phone=“default“ scene_position=“center“ text_color=“dark“ text_align=“left“ row_border_radius=“none“ row_border_radius_applies=“bg“ overlay_strength=“0.3″ gradient_direction=“left_to_right“ shape_divider_position=“bottom“ bg_image_animation=“none“][vc_column column_padding=“padding-5-percent“ column_padding_tablet=“inherit“ column_padding_phone=“inherit“ column_padding_position=“left-right“ background_color_opacity=“1″ background_hover_color_opacity=“1″ column_shadow=“none“ column_border_radius=“none“ column_link_target=“_self“ gradient_direction=“left_to_right“ overlay_strength=“0.3″ width=“1\/1″ tablet_width_inherit=“default“ tablet_text_alignment=“default“ phone_text_alignment=“default“ column_border_width=“none“ column_border_style=“solid“ bg_image_animation=“none“][vc_row_inner column_margin=“default“ column_direction=“default“ column_direction_tablet=“default“ column_direction_phone=“default“ text_align=“left“][vc_column_inner column_padding=“padding-5-percent“ column_padding_tablet=“inherit“ column_padding_phone=“inherit“ column_padding_position=“left-right“ background_color_opacity=“1″ background_hover_color_opacity=“1″ column_shadow=“none“ column_border_radius=“none“ column_link_target=“_self“ gradient_direction=“left_to_right“ overlay_strength=“0.3″ width=“1\/1″ tablet_width_inherit=“default“ column_border_width=“none“ column_border_style=“solid“ bg_image_animation=“none“][vc_column_text]Hola a todos. De nuevo estoy por aqu\u00ed. Siguiendo la vida, los acontecimientos, los retos del d\u00eda a d\u00eda, las alegr\u00edas, las penas, esta cuartilla en blanco que me espera todos los meses\u2026 viviendo, que no es poco. No os voy a hablar de Coronavirus porque creo que todos estamos suficientemente informados de la situaci\u00f3n actual. Si que me gustar\u00eda enviar un fuerte abrazo a todos y en especial a los profesionales de diferentes \u00e1mbitos que se est\u00e1n jugando el tipo por nosotros en toda Espa\u00f1a. <\/span>[\/vc_column_text][\/vc_column_inner][\/vc_row_inner][vc_row_inner equal_height=“yes“ content_placement=“middle“ column_margin=“default“ column_direction=“default“ column_direction_tablet=“default“ column_direction_phone=“default“ text_align=“left“][vc_column_inner column_padding=“padding-5-percent“ column_padding_tablet=“inherit“ column_padding_phone=“inherit“ column_padding_position=“left-right“ background_color_opacity=“1″ background_hover_color_opacity=“1″ column_shadow=“none“ column_border_radius=“none“ column_link_target=“_self“ gradient_direction=“left_to_right“ overlay_strength=“0.3″ width=“2\/3″ tablet_width_inherit=“default“ column_border_width=“none“ column_border_style=“solid“ bg_image_animation=“none“][vc_column_text]Si que os hablar\u00e9 del acto al que acud\u00ed el d\u00eda 29 de febrero, D\u00eda Mundial de las Enfermedades Raras. En concreto a la II Gala Ben\u00e9fica de la Fundaci\u00f3n Inversi\u00f3n-Duplicaci\u00f3n Cromosoma 15Q. Este S\u00edndrome, tambi\u00e9n conocido como tetrasom\u00eda parcial del cromosoma 15, es una alteraci\u00f3n cromos\u00f3mica de origen num\u00e9rico y estructural cuya prevalencia es 1\/30000 individuos nacidos y que afecta por igual a ambos sexos. Los s\u00edntomas de esta enfermedad son variados, dependiendo de las duplicaciones:<\/span><\/p>\n

\u2022 Hipoton\u00eda central temprana
\n\u2022 Retraso en el desarrollo psicomotor
\n\u2022 Discapacidad intelectual de moderada a grave
\n\u2022 Trastorno generalizado del desarrollo
\n\u2022 Epilepsia[\/vc_column_text][\/vc_column_inner][vc_column_inner column_padding=“no-extra-padding“ column_padding_tablet=“inherit“ column_padding_phone=“inherit“ column_padding_position=“all“ background_color_opacity=“1″ background_hover_color_opacity=“1″ column_shadow=“none“ column_border_radius=“none“ column_link_target=“_self“ gradient_direction=“left_to_right“ overlay_strength=“0.3″ width=“1\/3″ tablet_width_inherit=“default“ column_border_width=“none“ column_border_style=“solid“ bg_image_animation=“none“][split_line_heading animation_type=“default“]\n

Cualquier persona, con enfermedad o sin ella, busca lo mismo: ser aceptada, comprendida, ser uno m\u00e1s\u2026<\/h3>\n[\/split_line_heading][\/vc_column_inner][\/vc_row_inner][vc_row_inner column_margin=“default“ column_direction=“default“ column_direction_tablet=“default“ column_direction_phone=“default“ text_align=“left“][vc_column_inner column_padding=“padding-5-percent“ column_padding_tablet=“inherit“ column_padding_phone=“inherit“ column_padding_position=“left-right“ background_color_opacity=“1″ background_hover_color_opacity=“1″ column_shadow=“none“ column_border_radius=“none“ column_link_target=“_self“ gradient_direction=“left_to_right“ overlay_strength=“0.3″ width=“1\/1″ tablet_width_inherit=“default“ column_border_width=“none“ column_border_style=“solid“ bg_image_animation=“none“][vc_column_text]Os he puesto un breve resumen, para que sep\u00e1is que existe. Pues considero imprescindible que se conozca. Como veis, tiene relaci\u00f3n con la epilepsia. Pues fue una Gala impresionante. En ella, la tristeza o la autocompasi\u00f3n estuvieron ausentes. No lo estuvieron ni la alegr\u00eda, ni el amor, ni la emoci\u00f3n. El vicepresidente de la Fundaci\u00f3n, Jos\u00e9 Carlos Sicilia, ley\u00f3 una carta a su hijo, que tiene esta enfermedad, de lo m\u00e1s emotiva, pero no por ello triste o desesperanzadora. Esa carta rebosaba amor.<\/span>[\/vc_column_text][vc_column_text]Recordemos que cualquier persona, con enfermedad o sin ella, busca lo mismo: ser aceptada, comprendida, ser uno m\u00e1s\u2026 y nadie nos ha de decir qu\u00e9 es raro o qu\u00e9 no es raro. Supongo que la enfermedad es la que es rara por ser poco conocida y padecerla poca gente. Pero las personas que la tienen no son raras. Quieren lo mismo: cari\u00f1o y aceptaci\u00f3n. Y ellos lo dan a raudales.<\/span>[\/vc_column_text][vc_column_text]Cambiemos todos nuestra mirada. A veces, es lo que m\u00e1s da\u00f1o hace.
\nY que la „normalidad“ vuelva lo antes posible. Muchos \u00e1nimos, y si #yomequedoencasa<\/span>[\/vc_column_text][image_with_animation image_url=“17768″ animation=“Fade In“ hover_animation=“none“ alignment=“center“ border_radius=“none“ box_shadow=“none“ image_loading=“default“ max_width=“100%“ max_width_mobile=“default“][\/vc_column_inner][\/vc_row_inner][\/vc_column][\/vc_row][vc_row type=“in_container“ full_screen_row_position=“middle“ column_margin=“default“ column_direction=“default“ column_direction_tablet=“default“ column_direction_phone=“default“ scene_position=“center“ top_padding=“3%“ bottom_padding=“0″ text_color=“dark“ text_align=“left“ row_border_radius=“none“ row_border_radius_applies=“bg“ overlay_strength=“0.3″ gradient_direction=“left_to_right“ shape_divider_position=“bottom“ bg_image_animation=“none“ shape_type=““][vc_column column_padding=“no-extra-padding“ column_padding_tablet=“inherit“ column_padding_phone=“inherit“ column_padding_position=“all“ background_color_opacity=“1″ background_hover_color_opacity=“1″ column_shadow=“none“ column_border_radius=“none“ column_link_target=“_self“ gradient_direction=“left_to_right“ overlay_strength=“0.3″ width=“1\/1″ tablet_width_inherit=“default“ tablet_text_alignment=“default“ phone_text_alignment=“default“ column_border_width=“none“ column_border_style=“solid“ bg_image_animation=“none“][vc_row_inner column_margin=“default“ column_direction=“default“ column_direction_tablet=“default“ column_direction_phone=“default“ text_align=“center“][vc_column_inner column_padding=“no-extra-padding“ column_padding_tablet=“inherit“ column_padding_phone=“inherit“ column_padding_position=“all“ background_color_opacity=“1″ background_hover_color_opacity=“1″ column_shadow=“none“ column_border_radius=“none“ column_link_target=“_self“ gradient_direction=“left_to_right“ overlay_strength=“0.3″ width=“1\/1″ tablet_width_inherit=“default“ column_border_width=“none“ column_border_style=“solid“ bg_image_animation=“none“]
<\/i>Love<\/span>1<\/span><\/span><\/a> <\/i> <\/i>