{"id":19567,"date":"2026-04-08T18:10:03","date_gmt":"2026-04-08T18:10:03","guid":{"rendered":"https:\/\/www.rawoodfoundation.org\/?page_id=19567"},"modified":"2026-04-08T18:16:15","modified_gmt":"2026-04-08T18:16:15","slug":"unase-al-comite-consultivo-de-pacientes","status":"publish","type":"page","link":"https:\/\/www.rawoodfoundation.org\/es\/unase-al-comite-consultivo-de-pacientes\/","title":{"rendered":"\u00danase al Comit\u00e9 Consultivo de Pacientes"},"content":{"rendered":"<h2 class=\"wp-block-heading\">Aportar conocimientos que informen directamente nuestro trabajo y hagan avanzar la atenci\u00f3n y los resultados.<\/h2>\n\n\n<div class=\"wp-block-image\">\n<figure class=\"alignright size-full\"><img decoding=\"async\" width=\"600\" height=\"429\" src=\"https:\/\/www.rawoodfoundation.org\/wp-content\/uploads\/2026\/04\/group.jpg\" alt=\"Grupo hablando en una conferencia\" class=\"wp-image-19570\" srcset=\"https:\/\/www.rawoodfoundation.org\/wp-content\/uploads\/2026\/04\/group.jpg 600w, https:\/\/www.rawoodfoundation.org\/wp-content\/uploads\/2026\/04\/group-300x215.jpg 300w, https:\/\/www.rawoodfoundation.org\/wp-content\/uploads\/2026\/04\/group-18x12.jpg 18w\" sizes=\"(max-width: 600px) 100vw, 600px\" \/><\/figure><\/div>\n\n\n<p>El Comit\u00e9 Asesor de Pacientes (PAC) de la Fundaci\u00f3n Raymond A. Wood (RAWF) es un grupo de personas que aportan su experiencia vivida para informar y orientar la labor de la fundaci\u00f3n en materia de investigaci\u00f3n, defensa y compromiso con la comunidad.<\/p>\n\n\n\n<p>Los miembros del PAC act\u00faan como asesores de confianza, garantizando que todas las iniciativas reflejen las necesidades, retos y prioridades reales de los supervivientes de tumores cerebrales hipotal\u00e1mico-hipofisarios y sus cuidadores.<\/p>\n\n\n\n<a class=\"gb-button gb-button-e355c175 gb-button-text\" href=\"https:\/\/docs.google.com\/forms\/d\/e\/1FAIpQLSe-qTnjKNLkr3WTgQD6Tws5htWoMvsB-KE5ZQwEH2QNx76-xA\/viewform?usp=publish-editor\" target=\"_blank\" rel=\"noopener noreferrer\">Solicitar hoy<\/a>\n\n\n\n<div style=\"height:56px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<p><strong>Objetivo de la funci\u00f3n<\/strong><\/p>\n\n\n\n<p>Los miembros del PAC desempe\u00f1an un papel fundamental en la formaci\u00f3n:<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li>Prioridades de investigaci\u00f3n centradas en el paciente<\/li>\n\n\n\n<li>Estrategias de promoci\u00f3n para mejorar el acceso a la atenci\u00f3n sanitaria<\/li>\n\n\n\n<li>Recursos educativos y programaci\u00f3n comunitaria<\/li>\n\n\n\n<li>Esfuerzos de compromiso que reflejen las necesidades de una comunidad mundial diversa.<\/li>\n<\/ul>\n\n\n\n<p>Esta funci\u00f3n apoya directamente el compromiso de RAWF de centrar las voces de los pacientes en todo lo que hacemos.<\/p>\n\n\n\n<p><strong>Responsabilidades clave<\/strong><\/p>\n\n\n\n<p>Se espera que los miembros del PAC<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li>Participar en reuniones virtuales trimestrales y grupos de trabajo ocasionales.<\/li>\n\n\n\n<li>Aportar comentarios sobre iniciativas de investigaci\u00f3n, encuestas y materiales dirigidos a los pacientes.<\/li>\n\n\n\n<li>Compartir las experiencias vividas para informar los programas y los esfuerzos de promoci\u00f3n<\/li>\n\n\n\n<li>Revisar los contenidos educativos para garantizar su claridad, accesibilidad y pertinencia.<\/li>\n\n\n\n<li>Contribuir a un entorno respetuoso, integrador y colaborativo<\/li>\n\n\n\n<li>Actuar como representantes de la comunidad cuando proceda<\/li>\n<\/ul>\n\n\n\n<p><strong>Qui\u00e9n puede optar a la ayuda<\/strong><\/p>\n\n\n\n<p>Para garantizar perspectivas diversas e inclusivas, RAWF est\u00e1 buscando activamente miembros del PAC que reflejen una amplia gama de experiencias vividas, incluyendo:<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li>Supervivientes adultos diagnosticados<\/li>\n\n\n\n<li>Supervivientes diagnosticados en la infancia<\/li>\n\n\n\n<li>Personas con experiencia en supervivencia a largo plazo<\/li>\n\n\n\n<li>Cuidadores y familiares<\/li>\n\n\n\n<li>Diversidad geogr\u00e1fica (representaci\u00f3n estadounidense e internacional)<\/li>\n<\/ul>\n\n\n\n<p><strong>Cualificaciones<\/strong><\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li>Experiencia vital como superviviente o cuidador de un tumor cerebral hipotal\u00e1mico-hipofisario\/craneofaringioma.<\/li>\n\n\n\n<li>Disposici\u00f3n a compartir experiencias de forma reflexiva y constructiva.<\/li>\n\n\n\n<li>Capacidad para participar en reuniones virtuales<\/li>\n\n\n\n<li>Inter\u00e9s en mejorar los resultados para la comunidad de pacientes en general.<\/li>\n<\/ul>\n\n\n\n<p>No se requiere experiencia previa como asesor o profesional.<\/p>\n\n\n\n<p><strong>Compromiso de tiempo<\/strong><\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li>Aproximadamente 2-4 horas por trimestre<\/li>\n\n\n\n<li>Oportunidades opcionales de participaci\u00f3n adicional en funci\u00f3n del inter\u00e9s y la disponibilidad<\/li>\n<\/ul>\n\n\n\n<p><strong>Compensaci\u00f3n<\/strong><\/p>\n\n\n\n<p>Se trata de una funci\u00f3n voluntaria. Aunque no hay compensaci\u00f3n econ\u00f3mica, los miembros del PAC tienen la oportunidad de:<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li>Influir en la investigaci\u00f3n, la defensa y los programas que afectan a la comunidad mundial.<\/li>\n\n\n\n<li>Contribuir a un cambio significativo centrado en el paciente<\/li>\n\n\n\n<li>Conectar con una red de supervivientes, cuidadores y l\u00edderes<\/li>\n\n\n\n<li>Adquirir experiencia en promoci\u00f3n, asesoramiento y participaci\u00f3n sin \u00e1nimo de lucro.<\/li>\n<\/ul>\n\n\n\n<p><strong>Impacto<\/strong><\/p>\n\n\n\n<p>Como miembro del PAC, su voz influir\u00e1 directamente:<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li>El futuro de la investigaci\u00f3n y la atenci\u00f3n a los supervivientes de tumores hipotal\u00e1mico-hipofisarios<\/li>\n\n\n\n<li>Actividades de promoci\u00f3n para mejorar el acceso al tratamiento y la sensibilizaci\u00f3n<\/li>\n\n\n\n<li>Recursos de apoyo a pacientes y familiares en todo el mundo<\/li>\n<\/ul>\n\n\n\n<p>Su experiencia vivida ayuda a garantizar que nadie se encuentre solo en este viaje.<\/p>\n\n\n\n<a class=\"gb-button gb-button-efbedea5 gb-button-text\" href=\"https:\/\/docs.google.com\/forms\/d\/e\/1FAIpQLSe-qTnjKNLkr3WTgQD6Tws5htWoMvsB-KE5ZQwEH2QNx76-xA\/viewform?usp=publish-editor\" target=\"_blank\" rel=\"noopener noreferrer\">Solicitar hoy<\/a>","protected":false},"excerpt":{"rendered":"<p>Provide insight that directly informs our work and advances care and outcomes. 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