{"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\/ca\/guerreros\/raros-no\/","title":{"rendered":"Raros no"},"content":{"rendered":"[vc_row type=\u00bbin_container\u00bb full_screen_row_position=\u00bbmiddle\u00bb column_margin=\u00bbdefault\u00bb column_direction=\u00bbdefault\u00bb column_direction_tablet=\u00bbdefault\u00bb column_direction_phone=\u00bbdefault\u00bb scene_position=\u00bbcenter\u00bb text_color=\u00bbdark\u00bb text_align=\u00bbleft\u00bb row_border_radius=\u00bbnone\u00bb row_border_radius_applies=\u00bbbg\u00bb overlay_strength=\u00bb0.3″ gradient_direction=\u00bbleft_to_right\u00bb shape_divider_position=\u00bbbottom\u00bb bg_image_animation=\u00bbnone\u00bb][vc_column column_padding=\u00bbpadding-5-percent\u00bb column_padding_tablet=\u00bbinherit\u00bb column_padding_phone=\u00bbinherit\u00bb column_padding_position=\u00bbleft-right\u00bb background_color_opacity=\u00bb1″ background_hover_color_opacity=\u00bb1″ column_shadow=\u00bbnone\u00bb column_border_radius=\u00bbnone\u00bb column_link_target=\u00bb_self\u00bb gradient_direction=\u00bbleft_to_right\u00bb overlay_strength=\u00bb0.3″ width=\u00bb1\/1″ tablet_width_inherit=\u00bbdefault\u00bb tablet_text_alignment=\u00bbdefault\u00bb phone_text_alignment=\u00bbdefault\u00bb column_border_width=\u00bbnone\u00bb column_border_style=\u00bbsolid\u00bb bg_image_animation=\u00bbnone\u00bb][vc_row_inner column_margin=\u00bbdefault\u00bb column_direction=\u00bbdefault\u00bb column_direction_tablet=\u00bbdefault\u00bb column_direction_phone=\u00bbdefault\u00bb text_align=\u00bbleft\u00bb][vc_column_inner column_padding=\u00bbpadding-10-percent\u00bb column_padding_tablet=\u00bbinherit\u00bb column_padding_phone=\u00bbinherit\u00bb column_padding_position=\u00bbleft-right\u00bb background_color_opacity=\u00bb1″ background_hover_color_opacity=\u00bb1″ column_shadow=\u00bbnone\u00bb column_border_radius=\u00bbnone\u00bb column_link_target=\u00bb_self\u00bb gradient_direction=\u00bbleft_to_right\u00bb overlay_strength=\u00bb0.3″ width=\u00bb1\/4″ tablet_width_inherit=\u00bbdefault\u00bb column_border_width=\u00bbnone\u00bb column_border_style=\u00bbsolid\u00bb bg_image_animation=\u00bbnone\u00bb][\/vc_column_inner][vc_column_inner column_padding=\u00bbno-extra-padding\u00bb column_padding_tablet=\u00bbinherit\u00bb column_padding_phone=\u00bbinherit\u00bb column_padding_position=\u00bball\u00bb background_color_opacity=\u00bb1″ background_hover_color_opacity=\u00bb1″ column_shadow=\u00bbnone\u00bb column_border_radius=\u00bbnone\u00bb column_link_target=\u00bb_self\u00bb gradient_direction=\u00bbleft_to_right\u00bb overlay_strength=\u00bb0.3″ width=\u00bb1\/2″ tablet_width_inherit=\u00bbdefault\u00bb column_border_width=\u00bbnone\u00bb column_border_style=\u00bbsolid\u00bb bg_image_animation=\u00bbnone\u00bb][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=\u00bbno-extra-padding\u00bb column_padding_tablet=\u00bbinherit\u00bb column_padding_phone=\u00bbinherit\u00bb column_padding_position=\u00bball\u00bb background_color_opacity=\u00bb1″ background_hover_color_opacity=\u00bb1″ column_shadow=\u00bbnone\u00bb column_border_radius=\u00bbnone\u00bb column_link_target=\u00bb_self\u00bb gradient_direction=\u00bbleft_to_right\u00bb overlay_strength=\u00bb0.3″ width=\u00bb1\/4″ tablet_width_inherit=\u00bbdefault\u00bb column_border_width=\u00bbnone\u00bb column_border_style=\u00bbsolid\u00bb bg_image_animation=\u00bbnone\u00bb][\/vc_column_inner][\/vc_row_inner][\/vc_column][\/vc_row][vc_row type=\u00bbin_container\u00bb full_screen_row_position=\u00bbmiddle\u00bb column_margin=\u00bbdefault\u00bb column_direction=\u00bbdefault\u00bb column_direction_tablet=\u00bbdefault\u00bb column_direction_phone=\u00bbdefault\u00bb scene_position=\u00bbcenter\u00bb text_color=\u00bbdark\u00bb text_align=\u00bbleft\u00bb row_border_radius=\u00bbnone\u00bb row_border_radius_applies=\u00bbbg\u00bb overlay_strength=\u00bb0.3″ gradient_direction=\u00bbleft_to_right\u00bb shape_divider_position=\u00bbbottom\u00bb bg_image_animation=\u00bbnone\u00bb][vc_column column_padding=\u00bbpadding-5-percent\u00bb column_padding_tablet=\u00bbinherit\u00bb column_padding_phone=\u00bbinherit\u00bb column_padding_position=\u00bbleft-right\u00bb background_color_opacity=\u00bb1″ background_hover_color_opacity=\u00bb1″ column_shadow=\u00bbnone\u00bb column_border_radius=\u00bbnone\u00bb column_link_target=\u00bb_self\u00bb gradient_direction=\u00bbleft_to_right\u00bb overlay_strength=\u00bb0.3″ width=\u00bb1\/1″ tablet_width_inherit=\u00bbdefault\u00bb tablet_text_alignment=\u00bbdefault\u00bb phone_text_alignment=\u00bbdefault\u00bb column_border_width=\u00bbnone\u00bb column_border_style=\u00bbsolid\u00bb bg_image_animation=\u00bbnone\u00bb][vc_row_inner column_margin=\u00bbdefault\u00bb column_direction=\u00bbdefault\u00bb column_direction_tablet=\u00bbdefault\u00bb column_direction_phone=\u00bbdefault\u00bb text_align=\u00bbleft\u00bb][vc_column_inner column_padding=\u00bbpadding-5-percent\u00bb column_padding_tablet=\u00bbinherit\u00bb column_padding_phone=\u00bbinherit\u00bb column_padding_position=\u00bbleft-right\u00bb background_color_opacity=\u00bb1″ background_hover_color_opacity=\u00bb1″ column_shadow=\u00bbnone\u00bb column_border_radius=\u00bbnone\u00bb column_link_target=\u00bb_self\u00bb gradient_direction=\u00bbleft_to_right\u00bb overlay_strength=\u00bb0.3″ width=\u00bb1\/1″ tablet_width_inherit=\u00bbdefault\u00bb column_border_width=\u00bbnone\u00bb column_border_style=\u00bbsolid\u00bb bg_image_animation=\u00bbnone\u00bb][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=\u00bbyes\u00bb content_placement=\u00bbmiddle\u00bb column_margin=\u00bbdefault\u00bb column_direction=\u00bbdefault\u00bb column_direction_tablet=\u00bbdefault\u00bb column_direction_phone=\u00bbdefault\u00bb text_align=\u00bbleft\u00bb][vc_column_inner column_padding=\u00bbpadding-5-percent\u00bb column_padding_tablet=\u00bbinherit\u00bb column_padding_phone=\u00bbinherit\u00bb column_padding_position=\u00bbleft-right\u00bb background_color_opacity=\u00bb1″ background_hover_color_opacity=\u00bb1″ column_shadow=\u00bbnone\u00bb column_border_radius=\u00bbnone\u00bb column_link_target=\u00bb_self\u00bb gradient_direction=\u00bbleft_to_right\u00bb overlay_strength=\u00bb0.3″ width=\u00bb2\/3″ tablet_width_inherit=\u00bbdefault\u00bb column_border_width=\u00bbnone\u00bb column_border_style=\u00bbsolid\u00bb bg_image_animation=\u00bbnone\u00bb][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=\u00bbno-extra-padding\u00bb column_padding_tablet=\u00bbinherit\u00bb column_padding_phone=\u00bbinherit\u00bb column_padding_position=\u00bball\u00bb background_color_opacity=\u00bb1″ background_hover_color_opacity=\u00bb1″ column_shadow=\u00bbnone\u00bb column_border_radius=\u00bbnone\u00bb column_link_target=\u00bb_self\u00bb gradient_direction=\u00bbleft_to_right\u00bb overlay_strength=\u00bb0.3″ width=\u00bb1\/3″ tablet_width_inherit=\u00bbdefault\u00bb column_border_width=\u00bbnone\u00bb column_border_style=\u00bbsolid\u00bb bg_image_animation=\u00bbnone\u00bb][split_line_heading animation_type=\u00bbdefault\u00bb]\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=\u00bbdefault\u00bb column_direction=\u00bbdefault\u00bb column_direction_tablet=\u00bbdefault\u00bb column_direction_phone=\u00bbdefault\u00bb text_align=\u00bbleft\u00bb][vc_column_inner column_padding=\u00bbpadding-5-percent\u00bb column_padding_tablet=\u00bbinherit\u00bb column_padding_phone=\u00bbinherit\u00bb column_padding_position=\u00bbleft-right\u00bb background_color_opacity=\u00bb1″ background_hover_color_opacity=\u00bb1″ column_shadow=\u00bbnone\u00bb column_border_radius=\u00bbnone\u00bb column_link_target=\u00bb_self\u00bb gradient_direction=\u00bbleft_to_right\u00bb overlay_strength=\u00bb0.3″ width=\u00bb1\/1″ tablet_width_inherit=\u00bbdefault\u00bb column_border_width=\u00bbnone\u00bb column_border_style=\u00bbsolid\u00bb bg_image_animation=\u00bbnone\u00bb][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 \u00abnormalidad\u00bb vuelva lo antes posible. Muchos \u00e1nimos, y si #yomequedoencasa<\/span>[\/vc_column_text][image_with_animation image_url=\u00bb17768″ animation=\u00bbFade In\u00bb hover_animation=\u00bbnone\u00bb alignment=\u00bbcenter\u00bb border_radius=\u00bbnone\u00bb box_shadow=\u00bbnone\u00bb image_loading=\u00bbdefault\u00bb max_width=\u00bb100%\u00bb max_width_mobile=\u00bbdefault\u00bb][\/vc_column_inner][\/vc_row_inner][\/vc_column][\/vc_row][vc_row type=\u00bbin_container\u00bb full_screen_row_position=\u00bbmiddle\u00bb column_margin=\u00bbdefault\u00bb column_direction=\u00bbdefault\u00bb column_direction_tablet=\u00bbdefault\u00bb column_direction_phone=\u00bbdefault\u00bb scene_position=\u00bbcenter\u00bb top_padding=\u00bb3%\u00bb bottom_padding=\u00bb0″ text_color=\u00bbdark\u00bb text_align=\u00bbleft\u00bb row_border_radius=\u00bbnone\u00bb row_border_radius_applies=\u00bbbg\u00bb overlay_strength=\u00bb0.3″ gradient_direction=\u00bbleft_to_right\u00bb shape_divider_position=\u00bbbottom\u00bb bg_image_animation=\u00bbnone\u00bb shape_type=\u00bb\u00bb][vc_column column_padding=\u00bbno-extra-padding\u00bb column_padding_tablet=\u00bbinherit\u00bb column_padding_phone=\u00bbinherit\u00bb column_padding_position=\u00bball\u00bb background_color_opacity=\u00bb1″ background_hover_color_opacity=\u00bb1″ column_shadow=\u00bbnone\u00bb column_border_radius=\u00bbnone\u00bb column_link_target=\u00bb_self\u00bb gradient_direction=\u00bbleft_to_right\u00bb overlay_strength=\u00bb0.3″ width=\u00bb1\/1″ tablet_width_inherit=\u00bbdefault\u00bb tablet_text_alignment=\u00bbdefault\u00bb phone_text_alignment=\u00bbdefault\u00bb column_border_width=\u00bbnone\u00bb column_border_style=\u00bbsolid\u00bb bg_image_animation=\u00bbnone\u00bb][vc_row_inner column_margin=\u00bbdefault\u00bb column_direction=\u00bbdefault\u00bb column_direction_tablet=\u00bbdefault\u00bb column_direction_phone=\u00bbdefault\u00bb text_align=\u00bbcenter\u00bb][vc_column_inner column_padding=\u00bbno-extra-padding\u00bb column_padding_tablet=\u00bbinherit\u00bb column_padding_phone=\u00bbinherit\u00bb column_padding_position=\u00bball\u00bb background_color_opacity=\u00bb1″ background_hover_color_opacity=\u00bb1″ column_shadow=\u00bbnone\u00bb column_border_radius=\u00bbnone\u00bb column_link_target=\u00bb_self\u00bb gradient_direction=\u00bbleft_to_right\u00bb overlay_strength=\u00bb0.3″ width=\u00bb1\/1″ tablet_width_inherit=\u00bbdefault\u00bb column_border_width=\u00bbnone\u00bb column_border_style=\u00bbsolid\u00bb bg_image_animation=\u00bbnone\u00bb]
<\/i>Love<\/span>1<\/span><\/span><\/a> <\/i> <\/i>