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Cure CLCN4 se enorgullece de colaborar con Simons Searchlight<\/strong> para albergar un registro formal de pacientes con la variaci\u00f3n del gen CLCN4. Invitamos a todas las familias afectadas por este cambio gen\u00e9tico a contribuir al registro, para construir un formidable banco de informaci\u00f3n sobre esta condici\u00f3n. Un registro de pacientes es una parte indispensable de la investigaci\u00f3n – descubre por qu\u00e9 a continuaci\u00f3n.<\/p>\n [\/et_pb_text][et_pb_button button_url=\u00bbhttps:\/\/research.simonssearchlight.org\/account\/create\u00bb url_new_window=\u00bbon\u00bb button_text=\u00bbInscr\u00edbete en nuestro registro de pacientes\u00bb button_alignment=\u00bbcenter\u00bb _builder_version=\u00bb4.16″ _module_preset=\u00bbdefault\u00bb custom_button=\u00bbon\u00bb button_text_color=\u00bb#FFFFFF\u00bb button_bg_color=\u00bb#12876F\u00bb global_colors_info=\u00bb{}\u00bb][\/et_pb_button][\/et_pb_column][et_pb_column type=\u00bb1_2″ _builder_version=\u00bb4.16″ custom_padding=\u00bb|||\u00bb global_colors_info=\u00bb{}\u00bb custom_padding__hover=\u00bb|||\u00bb][et_pb_image src=\u00bbhttps:\/\/cureclcn4.org\/wp-content\/uploads\/2021\/03\/474FDE98-1F12-4324-BBDA-DF0DC03D6958.jpg\u00bb title_text=\u00bb474FDE98-1F12-4324-BBDA-DF0DC03D6958″ _builder_version=\u00bb4.16″ _module_preset=\u00bbdefault\u00bb width=\u00bb81%\u00bb global_colors_info=\u00bb{}\u00bb][\/et_pb_image][\/et_pb_column][\/et_pb_row][et_pb_row custom_padding_last_edited=\u00bbon|phone\u00bb _builder_version=\u00bb4.16″ background_color=\u00bb#ffffff\u00bb max_width=\u00bb1200px\u00bb custom_padding=\u00bb30px|80px|28px|80px|false|false\u00bb custom_padding_tablet=\u00bb|80px||80px|false|true\u00bb custom_padding_phone=\u00bb40px|30px||30px||true\u00bb box_shadow_style=\u00bbpreset3″ box_shadow_vertical=\u00bb40px\u00bb box_shadow_blur=\u00bb100px\u00bb box_shadow_spread=\u00bb-30px\u00bb box_shadow_color=\u00bbrgba(0,0,0,0.22)\u00bb use_custom_width=\u00bbon\u00bb custom_width_px=\u00bb1200px\u00bb global_colors_info=\u00bb{}\u00bb][et_pb_column type=\u00bb4_4″ _builder_version=\u00bb4.16″ custom_padding=\u00bb|||\u00bb global_colors_info=\u00bb{}\u00bb custom_padding__hover=\u00bb|||\u00bb][et_pb_blurb title=\u00bbPreguntas frecuentes\u00bb content_max_width=\u00bb700px\u00bb _builder_version=\u00bb4.16″ header_level=\u00bbh1″ header_font=\u00bbFaustina|700|||||||\u00bb header_text_align=\u00bbcenter\u00bb header_text_color=\u00bb#007162″ header_font_size=\u00bb40px\u00bb header_line_height=\u00bb2em\u00bb body_line_height=\u00bb2em\u00bb text_orientation=\u00bbjustified\u00bb width=\u00bb100%\u00bb custom_padding=\u00bb0px||0px||false|false\u00bb link_option_url_new_window=\u00bbon\u00bb global_colors_info=\u00bb{}\u00bb][\/et_pb_blurb][\/et_pb_column][\/et_pb_row][et_pb_row custom_padding_last_edited=\u00bbon|phone\u00bb _builder_version=\u00bb4.16″ background_color=\u00bb#ffffff\u00bb max_width=\u00bb1200px\u00bb custom_padding=\u00bb30px|80px|28px|80px|false|false\u00bb custom_padding_tablet=\u00bb|80px||80px|false|true\u00bb custom_padding_phone=\u00bb40px|30px||30px||true\u00bb box_shadow_style=\u00bbpreset3″ box_shadow_vertical=\u00bb40px\u00bb box_shadow_blur=\u00bb100px\u00bb box_shadow_spread=\u00bb-30px\u00bb box_shadow_color=\u00bbrgba(0,0,0,0.22)\u00bb use_custom_width=\u00bbon\u00bb custom_width_px=\u00bb1200px\u00bb global_colors_info=\u00bb{}\u00bb][et_pb_column type=\u00bb4_4″ _builder_version=\u00bb4.16″ custom_padding=\u00bb|||\u00bb global_colors_info=\u00bb{}\u00bb custom_padding__hover=\u00bb|||\u00bb][et_pb_blurb title=\u00bb\u00bfQu\u00e9 es un registro de pacientes? \u00bb content_max_width=\u00bb700px\u00bb _builder_version=\u00bb4.16″ header_level=\u00bbh1″ header_font=\u00bb|700|||||||\u00bb header_text_align=\u00bbjustify\u00bb header_font_size=\u00bb20px\u00bb header_line_height=\u00bb2em\u00bb body_line_height=\u00bb2em\u00bb text_orientation=\u00bbjustified\u00bb width=\u00bb100%\u00bb custom_padding=\u00bb0px||0px||false|false\u00bb link_option_url_new_window=\u00bbon\u00bb global_colors_info=\u00bb{}\u00bb]<\/p>\n Un registro de pacientes es una recopilaci\u00f3n organizada de informaci\u00f3n sobre personas con una enfermedad concreta. Es como un archivador: contiene toda la informaci\u00f3n disponible sobre los individuos afectados por una enfermedad, de forma ordenada. Esta informaci\u00f3n puede referirse al historial m\u00e9dico de cada paciente, a sus antecedentes familiares, a la medicaci\u00f3n y a cualquier cambio que se produzca a lo largo del tiempo. Cuando tenemos esta informaci\u00f3n sobre un grupo de pacientes, podemos empezar a elaborar patrones de enfermedad, rangos de gravedad, a entender c\u00f3mo evolucionan los problemas con el tiempo, y saber si estrategias de tratamiento han funcionado o no. Este es el comienzo de la investigaci\u00f3n m\u00e9dica. Los registros de pacientes sirven para guiar la investigaci\u00f3n cient\u00edfica hacia lo que es importante para los individuos afectados, y a relacionar lo que vemos en el laboratorio con lo que ocurre en la vida real. Como tal, es una herramienta fundamental para toda buena investigaci\u00f3n m\u00e9dica.<\/span><\/p>\n [\/et_pb_blurb][\/et_pb_column][\/et_pb_row][et_pb_row custom_padding_last_edited=\u00bbon|phone\u00bb _builder_version=\u00bb4.16″ background_color=\u00bb#ffffff\u00bb max_width=\u00bb1200px\u00bb custom_padding=\u00bb30px|80px|28px|80px|false|false\u00bb custom_padding_tablet=\u00bb|80px||80px|false|true\u00bb custom_padding_phone=\u00bb40px|30px||30px||true\u00bb box_shadow_style=\u00bbpreset3″ box_shadow_vertical=\u00bb40px\u00bb box_shadow_blur=\u00bb100px\u00bb box_shadow_spread=\u00bb-30px\u00bb box_shadow_color=\u00bbrgba(0,0,0,0.22)\u00bb use_custom_width=\u00bbon\u00bb custom_width_px=\u00bb1200px\u00bb global_colors_info=\u00bb{}\u00bb][et_pb_column type=\u00bb4_4″ _builder_version=\u00bb4.16″ custom_padding=\u00bb|||\u00bb global_colors_info=\u00bb{}\u00bb custom_padding__hover=\u00bb|||\u00bb][et_pb_blurb title=\u00bb\u00bfPor qu\u00e9 son importantes los registros de pacientes? \u00bb content_max_width=\u00bb700px\u00bb _builder_version=\u00bb4.16″ header_level=\u00bbh1″ header_font=\u00bb|700|||||||\u00bb header_text_align=\u00bbjustify\u00bb header_font_size=\u00bb20px\u00bb header_line_height=\u00bb2em\u00bb body_line_height=\u00bb2em\u00bb text_orientation=\u00bbjustified\u00bb width=\u00bb100%\u00bb custom_padding=\u00bb0px||0px||false|false\u00bb link_option_url_new_window=\u00bbon\u00bb global_colors_info=\u00bb{}\u00bb]<\/p>\n Los registros de pacientes pueden beneficiar a las personas con enfermedades gen\u00e9ticas raras como la CLCN4 por tres razones principales:<\/span><\/p>\n 1. Los registros de pacientes pueden mejorar la atenci\u00f3n al paciente<\/strong><\/span><\/p>\n Cuando se sabe m\u00e1s sobre una enfermedad, se puede dar m\u00e1s informaci\u00f3n a las familias reci\u00e9n diagnosticadas, se puede disponer de tratamientos m\u00e1s eficaces y habr\u00e1 m\u00e1s conocimientos sobre c\u00f3mo utilizar estos tratamientos. Esto es a\u00fan m\u00e1s importante en enfermedades raras como la CLCN4, en la que ning\u00fan cl\u00ednico ha visto suficientes casos como para poder acumular la experiencia necesaria. Con cada familia que comparta su experiencia y conocimientos, se a\u00f1adir\u00e1 m\u00e1s informaci\u00f3n al banco de conocimientos, mejorando la atenci\u00f3n al paciente de forma colectiva y tambi\u00e9n individual, ya que lo que una familia comparte puede acabar ayudando a otra familia.<\/span><\/p>\n 2. Los registros amplifican tu voz<\/strong><\/span><\/p>\n Nuestro registro te pedir\u00e1 que des tu punto de vista sobre asuntos importantes sobre ti o tu hijo. Por ejemplo, te pedir\u00e1 tu opini\u00f3n sobre para que s\u00edntomas es m\u00e1s importantes encontrar tratamientos, o sobre qu\u00e9 tratamientos existentes desear\u00edas que hubiera mejor informaci\u00f3n. Compartir tu punto de vista es extremadamente poderoso, porque ayuda a las agencias de financiaci\u00f3n para la investigaci\u00f3n, a las empresas farmac\u00e9uticas, a las agencias reguladoras y a nuestras organizaciones de pacientes a saber c\u00f3mo satisfacer mejor tus necesidades. Exigir a los investigadores que escuchen y atiendan los intereses del paciente es cada vez m\u00e1s habitual, y se est\u00e1 convirtiendo en un requisito previo para conseguir financiaci\u00f3n o para que se aprueben los medicamentos.<\/span><\/p>\n 3. Los registros mejoran las posibilidades de desarrollo de medicamentos<\/strong><\/span><\/p>\n No hay forma de evitarlo, el desarrollo de f\u00e1rmacos es un proceso duro, largo y caro. A las empresas farmac\u00e9uticas les atrae mucho m\u00e1s desarrollar nuevas terapias para las comunidades de trastornos raros que ya tienen registros de pacientes con datos \u00fatiles y familias que han optado por participar en ensayos cl\u00ednicos. Esto les ahorra mucho tiempo y gastos, y les permite tener m\u00e1s posibilidades de \u00e9xito con la aprobaci\u00f3n reglamentaria.<\/span><\/p>\n \u00a0<\/p>\n [\/et_pb_blurb][\/et_pb_column][\/et_pb_row][et_pb_row custom_padding_last_edited=\u00bbon|phone\u00bb _builder_version=\u00bb4.16″ background_color=\u00bb#ffffff\u00bb max_width=\u00bb1200px\u00bb custom_padding=\u00bb30px|80px|28px|80px|false|false\u00bb custom_padding_tablet=\u00bb|80px||80px|false|true\u00bb custom_padding_phone=\u00bb40px|30px||30px||true\u00bb box_shadow_style=\u00bbpreset3″ box_shadow_vertical=\u00bb40px\u00bb box_shadow_blur=\u00bb100px\u00bb box_shadow_spread=\u00bb-30px\u00bb box_shadow_color=\u00bbrgba(0,0,0,0.22)\u00bb use_custom_width=\u00bbon\u00bb custom_width_px=\u00bb1200px\u00bb global_colors_info=\u00bb{}\u00bb][et_pb_column type=\u00bb4_4″ _builder_version=\u00bb4.16″ custom_padding=\u00bb|||\u00bb global_colors_info=\u00bb{}\u00bb custom_padding__hover=\u00bb|||\u00bb][et_pb_blurb title=\u00bb\u00bfCompartir\u00e1 el Registro mis datos personales? \u00bb content_max_width=\u00bb700px\u00bb _builder_version=\u00bb4.16″ header_level=\u00bbh1″ header_font=\u00bb|700|||||||\u00bb header_text_align=\u00bbjustify\u00bb header_font_size=\u00bb20px\u00bb header_line_height=\u00bb2em\u00bb body_line_height=\u00bb2em\u00bb text_orientation=\u00bbjustified\u00bb width=\u00bb100%\u00bb custom_padding=\u00bb0px||0px||false|false\u00bb link_option_url_new_window=\u00bbon\u00bb global_colors_info=\u00bb{}\u00bb]<\/p>\n Todas las investigaciones m\u00e9dicas se rigen por estrictas normas reguladoras y tienen que someterse a la aprobaci\u00f3n de un comit\u00e9 de \u00e9tica. Un registro de pacientes no es una excepci\u00f3n. Tus datos se mantendr\u00e1n seguros y tus datos identificables (como el nombre, ubicaci\u00f3n o datos de contacto) NO se compartir\u00e1n con ning\u00fan investigador, empresa farmac\u00e9utica o el p\u00fablico en general, a no ser que cuenten con tu consentimiento expl\u00edcito para un fin determinado.<\/span><\/p>\n \u00a0<\/p>\n [\/et_pb_blurb][\/et_pb_column][\/et_pb_row][et_pb_row custom_padding_last_edited=\u00bbon|phone\u00bb _builder_version=\u00bb4.16″ background_color=\u00bb#ffffff\u00bb max_width=\u00bb1200px\u00bb custom_padding=\u00bb30px|80px|28px|80px|false|false\u00bb custom_padding_tablet=\u00bb|80px||80px|false|true\u00bb custom_padding_phone=\u00bb40px|30px||30px||true\u00bb box_shadow_style=\u00bbpreset3″ box_shadow_vertical=\u00bb40px\u00bb box_shadow_blur=\u00bb100px\u00bb box_shadow_spread=\u00bb-30px\u00bb box_shadow_color=\u00bbrgba(0,0,0,0.22)\u00bb use_custom_width=\u00bbon\u00bb custom_width_px=\u00bb1200px\u00bb global_colors_info=\u00bb{}\u00bb][et_pb_column type=\u00bb4_4″ _builder_version=\u00bb4.16″ custom_padding=\u00bb|||\u00bb global_colors_info=\u00bb{}\u00bb custom_padding__hover=\u00bb|||\u00bb][et_pb_blurb title=\u00bb\u00bfY el reclutamiento para los ensayos cl\u00ednicos?\u00bb content_max_width=\u00bb700px\u00bb _builder_version=\u00bb4.16″ header_level=\u00bbh1″ header_font=\u00bb|700|||||||\u00bb header_text_align=\u00bbjustify\u00bb header_font_size=\u00bb20px\u00bb header_line_height=\u00bb2em\u00bb body_line_height=\u00bb2em\u00bb text_orientation=\u00bbjustified\u00bb width=\u00bb100%\u00bb custom_padding=\u00bb0px||0px||false|false\u00bb link_option_url_new_window=\u00bbon\u00bb global_colors_info=\u00bb{}\u00bb]<\/p>\n Apuntarse al registro de pacientes y compartir tu informaci\u00f3n no significa comprometerse a participar en ensayos cl\u00ednicos. Habr\u00e1 un proceso separado para reclutar pacientes para ensayos espec\u00edficos cuando llegue el momento. Cuando te inscribas para participar en el registro de pacientes, se te dar\u00e1 la oportunidad de optar para que se te contacte si un ensayo cl\u00ednico se abre. Se te asesorar\u00e1 sobre los detalles de cada ensayo y se te dar\u00e1 la opci\u00f3n de participar o no.<\/span><\/p>\n \u00a0<\/p>\n [\/et_pb_blurb][\/et_pb_column][\/et_pb_row][et_pb_row custom_padding_last_edited=\u00bbon|phone\u00bb _builder_version=\u00bb4.16″ background_color=\u00bb#ffffff\u00bb max_width=\u00bb1200px\u00bb custom_padding=\u00bb30px|80px|28px|80px|false|false\u00bb custom_padding_tablet=\u00bb|80px||80px|false|true\u00bb custom_padding_phone=\u00bb40px|30px||30px||true\u00bb box_shadow_style=\u00bbpreset3″ box_shadow_vertical=\u00bb40px\u00bb box_shadow_blur=\u00bb100px\u00bb box_shadow_spread=\u00bb-30px\u00bb box_shadow_color=\u00bbrgba(0,0,0,0.22)\u00bb use_custom_width=\u00bbon\u00bb custom_width_px=\u00bb1200px\u00bb global_colors_info=\u00bb{}\u00bb][et_pb_column type=\u00bb4_4″ _builder_version=\u00bb4.16″ custom_padding=\u00bb|||\u00bb global_colors_info=\u00bb{}\u00bb custom_padding__hover=\u00bb|||\u00bb][et_pb_blurb title=\u00bb\u00bfC\u00f3mo me inscribo en el registro de pacientes y qu\u00e9 necesito? \u00bb url_new_window=\u00bbon\u00bb content_max_width=\u00bb700px\u00bb _builder_version=\u00bb4.16″ header_level=\u00bbh1″ header_font=\u00bb|700|||||||\u00bb header_text_align=\u00bbjustify\u00bb header_font_size=\u00bb20px\u00bb header_line_height=\u00bb2em\u00bb body_line_height=\u00bb2em\u00bb text_orientation=\u00bbjustified\u00bb width=\u00bb100%\u00bb custom_padding=\u00bb0px||0px||false|false\u00bb link_option_url_new_window=\u00bbon\u00bb global_colors_info=\u00bb{}\u00bb]<\/p>\n Nuestro registro de pacientes est\u00e1 alojado en Simons Searchlight<\/a>, una iniciativa con la misi\u00f3n de avanzar la investigaci\u00f3n de los cambios gen\u00e9ticos relacionados con el autismo y el retraso del neurodesarrollo. Para participar\u00a0 reg\u00edstrate en Simons Searchlight, presenta tu informe del laboratorio gen\u00e9tico (si lo tienes) y luego haz una entrevista telef\u00f3nica de 60-90 minutos con uno de los asesores gen\u00e9ticos de Simons, que te har\u00e1 las preguntas pertinentes. Tambi\u00e9n te pedir\u00e1n permiso para ponerse en contacto contigo cada a\u00f1o para actualizar la informaci\u00f3n, de modo que tengan un registro de c\u00f3mo cambian las cosas con el tiempo. Para inscribirte en el registro de pacientes del CLCN4, mira este v\u00eddeo de Simons Searchlight, y cuando est\u00e9s listo para empezar, haz clic aqu\u00ed<\/a>. Si tienes alguna pregunta sobre el proceso de inscripci\u00f3n, puedes encontrar respuestas en las Preguntas Frecuentes<\/a> de Simons Searchlight, o bien puedes ponerte en contacto con ellos directamente<\/a>.<\/p>\n \u00a0<\/p>\n [\/et_pb_blurb][et_pb_video src=\u00bbhttps:\/\/www.youtube.com\/watch?v=n5e5AKPcKKw\u00bb _builder_version=\u00bb4.16″ _module_preset=\u00bbdefault\u00bb max_width=\u00bb70%\u00bb module_alignment=\u00bbcenter\u00bb global_colors_info=\u00bb{}\u00bb][\/et_pb_video][\/et_pb_column][\/et_pb_row][et_pb_row custom_padding_last_edited=\u00bbon|phone\u00bb _builder_version=\u00bb4.16″ background_color=\u00bb#ffffff\u00bb max_width=\u00bb1200px\u00bb custom_padding=\u00bb30px|80px|28px|80px|false|false\u00bb custom_padding_tablet=\u00bb|80px||80px|false|true\u00bb custom_padding_phone=\u00bb40px|30px||30px||true\u00bb box_shadow_style=\u00bbpreset3″ box_shadow_vertical=\u00bb40px\u00bb box_shadow_blur=\u00bb100px\u00bb box_shadow_spread=\u00bb-30px\u00bb 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global_colors_info=\u00bb{}\u00bb][\/et_pb_contact_field][\/et_pb_contact_form][\/et_pb_column][\/et_pb_row][et_pb_row _builder_version=\u00bb4.16″ global_colors_info=\u00bb{}\u00bb][et_pb_column type=\u00bb4_4″ _builder_version=\u00bb4.16″ custom_padding=\u00bb|||\u00bb global_colors_info=\u00bb{}\u00bb custom_padding__hover=\u00bb|||\u00bb][et_pb_social_media_follow _builder_version=\u00bb4.16″ text_orientation=\u00bbcenter\u00bb custom_margin=\u00bb|||||true\u00bb border_radii=\u00bbon|40px|40px|40px|40px\u00bb locked=\u00bboff\u00bb global_colors_info=\u00bb{}\u00bb][et_pb_social_media_follow_network social_network=\u00bbfacebook\u00bb url=\u00bbhttps:\/\/www.facebook.com\/groups\/272975780022928\/?ref=share\u00bb _builder_version=\u00bb4.16″ background_color=\u00bbrgba(255,255,255,0.2)\u00bb custom_margin=\u00bb|6px||6px||true\u00bb custom_padding=\u00bb8px|8px|8px|8px|true|true\u00bb global_colors_info=\u00bb{}\u00bb follow_button=\u00bboff\u00bb url_new_window=\u00bbon\u00bb]facebook[\/et_pb_social_media_follow_network][et_pb_social_media_follow_network social_network=\u00bblinkedin\u00bb url=\u00bbhttps:\/\/uk.linkedin.com\/company\/cure-clcn4?trk=public_profile_experience-item_result-card_image-click\u00bb _builder_version=\u00bb4.16″ _module_preset=\u00bbdefault\u00bb background_color=\u00bbrgba(255,255,255,0.2)\u00bb custom_margin=\u00bb|6px||6px|false|false\u00bb custom_padding=\u00bb8px|8px|8px|8px|false|false\u00bb global_colors_info=\u00bb{}\u00bb follow_button=\u00bboff\u00bb url_new_window=\u00bbon\u00bb]linkedin[\/et_pb_social_media_follow_network][\/et_pb_social_media_follow][\/et_pb_column][\/et_pb_row][\/et_pb_section]<\/p>\n","protected":false},"excerpt":{"rendered":" Cure CLCN4 se enorgullece de colaborar con Simons Searchlight para albergar un registro formal de pacientes con la variaci\u00f3n del gen CLCN4. Invitamos a todas las familias afectadas por este cambio gen\u00e9tico a contribuir al registro, para construir un formidable banco de informaci\u00f3n sobre esta condici\u00f3n.<\/p>\n","protected":false},"author":2,"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":""},"class_list":["post-2088","page","type-page","status-publish","hentry"],"_links":{"self":[{"href":"https:\/\/cureclcn4.org\/es\/wp-json\/wp\/v2\/pages\/2088","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/cureclcn4.org\/es\/wp-json\/wp\/v2\/pages"}],"about":[{"href":"https:\/\/cureclcn4.org\/es\/wp-json\/wp\/v2\/types\/page"}],"author":[{"embeddable":true,"href":"https:\/\/cureclcn4.org\/es\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/cureclcn4.org\/es\/wp-json\/wp\/v2\/comments?post=2088"}],"version-history":[{"count":10,"href":"https:\/\/cureclcn4.org\/es\/wp-json\/wp\/v2\/pages\/2088\/revisions"}],"predecessor-version":[{"id":3106,"href":"https:\/\/cureclcn4.org\/es\/wp-json\/wp\/v2\/pages\/2088\/revisions\/3106"}],"wp:attachment":[{"href":"https:\/\/cureclcn4.org\/es\/wp-json\/wp\/v2\/media?parent=2088"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}Empresas patrocinadoras<\/h2>\n
Ponte en contacto. Participa.<\/h2>\n