{"id":117,"date":"2021-10-22T19:54:32","date_gmt":"2021-10-22T19:54:32","guid":{"rendered":"https:\/\/live-rawf.pantheonsite.io\/2021\/10\/22\/2021-10-22-raymond-a-wood-foundation-hosts-patient-listening-session-on-hypothalamic-obesity\/"},"modified":"2023-08-22T21:01:14","modified_gmt":"2023-08-22T21:01:14","slug":"2021-10-22-la-fundacion-raymond-a-wood-organiza-una-sesion-de-escucha-de-pacientes-sobre-la-obesidad-hipotalamica","status":"publish","type":"post","link":"https:\/\/www.rawoodfoundation.org\/es\/2021\/10\/22\/2021-10-22-raymond-a-wood-foundation-hosts-patient-listening-session-on-hypothalamic-obesity\/","title":{"rendered":"La RAWF organiza una sesi\u00f3n de escucha de pacientes sobre HO"},"content":{"rendered":"<div class=\"sqs-html-content\">\n<p class=\"\" style=\"white-space: pre-wrap;\">La Fundaci\u00f3n Raymond A. Wood (RAWF), cuya misi\u00f3n es capacitar a los supervivientes de tumores cerebrales hipotal\u00e1mico-hipofisarios para mejorar su calidad de vida proporcion\u00e1ndoles acceso a la educaci\u00f3n, la tecnolog\u00eda y los tratamientos en evoluci\u00f3n, organiz\u00f3 una sesi\u00f3n de escucha de pacientes con la Administraci\u00f3n de Alimentos y Medicamentos el 22 de octubre de 2021 para aumentar la comprensi\u00f3n de la obesidad hipotal\u00e1mica (HO) y los desaf\u00edos diarios a los que se enfrentan los pacientes que viven con este raro trastorno y sus cuidadores.<\/p>\n<h2 style=\"white-space: pre-wrap;\"><strong>\u00bfQu\u00e9 es una sesi\u00f3n de escucha de pacientes?<\/strong><\/h2>\n<p class=\"\" style=\"white-space: pre-wrap;\"><strong>Las sesiones de escucha de pacientes son s<\/strong>mall, reuniones informales, no reglamentarias y no p\u00fablicas por teleconferencia que permiten a los participantes conectar con el personal de la FDA de primera mano y compartir experiencias, perspectivas y necesidades de los pacientes relacionadas con su salud o una enfermedad. Estas sesiones no tratan de productos m\u00e9dicos espec\u00edficos (f\u00e1rmacos, productos biol\u00f3gicos o dispositivos) y brindan a la FDA la oportunidad de conectar con comunidades infrarrepresentadas.<\/p>\n<p class=\"\" style=\"white-space: pre-wrap;\">Estas sesiones se planifican a trav\u00e9s de la Oficina de Asuntos del Paciente de la FDA y a ellas asisten revisores de la FDA de todos los centros. Una organizaci\u00f3n de defensa del paciente o un defensor pueden solicitar una sesi\u00f3n de escucha y, si se les concede, preparan y env\u00edan un orden del d\u00eda junto con un resumen de los retos en torno a la enfermedad y los objetivos a alcanzar en la sesi\u00f3n.<\/p>\n<h2 style=\"white-space: pre-wrap;\"><strong>\u00bfQui\u00e9n asiste a las sesiones de escucha de pacientes?<\/strong><\/h2>\n<p class=\"\" style=\"white-space: pre-wrap;\">Se invita a las divisiones\/oficinas espec\u00edficas que hayan indicado su deseo de asistir. A veces, la divisi\u00f3n designa a una o dos personas para que asistan en su nombre, y otras env\u00eda a toda la divisi\u00f3n. Las reuniones son reducidas y centradas para que los pacientes\/cuidadores se sientan m\u00e1s c\u00f3modos compartiendo. Los miembros de la comunidad de pacientes est\u00e1n invitados a escuchar.<\/p>\n<h2 style=\"white-space: pre-wrap;\"><strong>Objetivo de una sesi\u00f3n de escucha de pacientes<\/strong><\/h2>\n<p class=\"\" style=\"white-space: pre-wrap;\">Las Sesiones de Escucha de Pacientes ayudan a la Agencia a informar sobre el desarrollo de productos m\u00e9dicos, el dise\u00f1o de ensayos cl\u00ednicos, las preferencias de los pacientes, y da forma al pensamiento regulador. Durante una sesi\u00f3n de escucha de pacientes, el personal de la FDA le har\u00e1 preguntas o simplemente le escuchar\u00e1 para comprender mejor sus experiencias y perspectivas. En la sesi\u00f3n s\u00f3lo participan la FDA, pacientes, cuidadores, defensores y representantes de la comunidad.<\/p>\n<h2 style=\"white-space: pre-wrap;\"><strong>Objetivos de la sesi\u00f3n de escucha de pacientes con obesidad hipotal\u00e1mica<\/strong><\/h2>\n<p class=\"\" style=\"white-space: pre-wrap;\">Los objetivos de nuestra reuni\u00f3n eran ayudar a la FDA a comprender mejor la obesidad hipotal\u00e1mica como enfermedad rara y sus implicaciones.<\/p>\n<p class=\"\" style=\"white-space: pre-wrap;\">Estos objetivos inclu\u00edan la comprensi\u00f3n de:<\/p>\n<ul data-rte-list=\"default\">\n<li>\n<p class=\"\" style=\"white-space: pre-wrap;\">La carga de vivir con la enfermedad, especialmente despu\u00e9s de sobrevivir a un tumor cerebral.<\/p>\n<\/li>\n<li>\n<p class=\"\" style=\"white-space: pre-wrap;\">El impacto en las familias, incluidos los hermanos<\/p>\n<\/li>\n<li>\n<p class=\"\" style=\"white-space: pre-wrap;\">La carga que soportan los cuidadores<\/p>\n<\/li>\n<li>\n<p class=\"\" style=\"white-space: pre-wrap;\">Implicaciones sociales de la OS<\/p>\n<\/li>\n<li>\n<p class=\"\" style=\"white-space: pre-wrap;\">La distinci\u00f3n entre HO y obesidad t\u00edpica<\/p>\n<\/li>\n<li>\n<p class=\"\" style=\"white-space: pre-wrap;\">Los retos a los que se enfrentan los m\u00e9dicos al tratar a los pacientes<\/p>\n<\/li>\n<li>\n<p class=\"\" style=\"white-space: pre-wrap;\">Las necesidades no cubiertas y la necesidad de opciones de tratamiento<\/p>\n<\/li>\n<\/ul>\n<h2 style=\"white-space: pre-wrap;\"><strong>Mayor concienciaci\u00f3n sobre la obesidad hipotal\u00e1mica<\/strong><\/h2>\n<p class=\"\" style=\"white-space: pre-wrap;\">En un esfuerzo por aumentar la concienciaci\u00f3n sobre la obesidad aguda, su diferencia con la obesidad t\u00edpica y la necesidad de investigaci\u00f3n e innovaciones en el tratamiento, RAWF solicit\u00f3 una sesi\u00f3n de escucha de pacientes en primavera y present\u00f3 una agenda de ponentes con diversas perspectivas sobre la obesidad aguda, desde supervivientes a cuidadores e investigadores.<\/p>\n<p class=\"\" style=\"white-space: pre-wrap;\">Entre los ponentes figuran:<\/p>\n<ul data-rte-list=\"default\">\n<li>\n<p class=\"\" style=\"white-space: pre-wrap;\">Amy Wood, directora ejecutiva de RAWF, present\u00f3 al panel de ponentes y ofreci\u00f3 una visi\u00f3n general de la HO.<\/p>\n<\/li>\n<li>\n<p class=\"\" style=\"white-space: pre-wrap;\">La Dra. Shana McCormack, del Hospital Infantil de Filadelfia, comparti\u00f3 informaci\u00f3n desde una perspectiva cl\u00ednica sobre el diagn\u00f3stico, los retos del tratamiento y los resultados de la calidad de vida.<\/p>\n<\/li>\n<li>\n<p class=\"\" style=\"white-space: pre-wrap;\">Catherine St. James, superviviente de un craneofaringioma, comparti\u00f3 su experiencia de crecer con un HO y el impacto social que tuvo.<\/p>\n<\/li>\n<li>\n<p class=\"\" style=\"white-space: pre-wrap;\">Marci Serota, dietista nutricionista titulada y madre de Jake, un paciente con HO, habl\u00f3 de la obesidad por HO frente a la obesidad est\u00e1ndar y del impacto de la dieta y el ejercicio.<\/p>\n<\/li>\n<li>\n<p class=\"\" style=\"white-space: pre-wrap;\">Eugenie Hsu, Ph.D. cuidadora e hijo Alex Riley, un adolescente que vive con HO e hiperfagia, explican la carga que soportan los cuidadores y las familias. Alex dio su perspectiva sobre el deseo de obtener alimentos a toda costa, incluyendo el robo y el acaparamiento. Tambi\u00e9n hablan de su investigaci\u00f3n experimental con oxitocina y naltrexona en el tratamiento de los s\u00edntomas de Alex.<\/p>\n<\/li>\n<li>\n<p class=\"\" style=\"white-space: pre-wrap;\">A Jeannette Ryals le diagnosticaron un craneofaringioma en la edad adulta. Antes del tratamiento, era una entusiasta del ejercicio y corredora de maratones, pero inmediatamente despu\u00e9s del tratamiento desarroll\u00f3 hiperfagia y el consiguiente aumento de peso a pesar de sus esfuerzos con la dieta y el ejercicio. Nos ofrece su punto de vista sobre los retos de vivir con un HO.<\/p>\n<\/li>\n<li>\n<p class=\"\" style=\"white-space: pre-wrap;\">Chris Selko comparti\u00f3 los retos a los que se enfrenta el cuidado de AJ, un joven adulto que vive con HO e hiperfagia y el impacto en la familia y los hermanos. Habla de todos los esfuerzos realizados para tratar los s\u00edntomas de la HO de AJ con varios f\u00e1rmacos y ensayos cl\u00ednicos sin \u00e9xito.<\/p>\n<\/li>\n<\/ul>\n<\/div>\n<div class=\"image-block-outer-wrapper          layout-caption-below          design-layout-inline          combination-animation-none          individual-animation-none          individual-text-animation-none\" data-test=\"image-block-inline-outer-wrapper\"><\/p>\n<figure class=\"sqs-block-image-figure              intrinsic\" style=\"max-width: 960px;\"><\/p>\n<div class=\"image-block-wrapper\" data-animation-role=\"image\">\n<div class=\"sqs-image-shape-container-element              has-aspect-ratio\" style=\"position: relative; padding-bottom: 56.25%; overflow: hidden; -webkit-mask-image: -webkit-radial-gradient(white, black);\"><\/p>\n<p><noscript><img decoding=\"async\" src=\"https:\/\/images.squarespace-cdn.com\/content\/v1\/587bc3d946c3c4be42a60e48\/1634912860858-W4RB5AQABKCBSC2ZS12S\/FDA+Listening+Session+%281%29.jpg\" alt=\"\" \/><\/noscript><img decoding=\"async\" class=\"thumb-image\" src=\"https:\/\/images.squarespace-cdn.com\/content\/v1\/587bc3d946c3c4be42a60e48\/1634912860858-W4RB5AQABKCBSC2ZS12S\/FDA+Listening+Session+%281%29.jpg\" alt=\"\" data-image=\"https:\/\/images.squarespace-cdn.com\/content\/v1\/587bc3d946c3c4be42a60e48\/1634912860858-W4RB5AQABKCBSC2ZS12S\/FDA+Listening+Session+%281%29.jpg\" data-image-dimensions=\"960x540\" data-image-focal-point=\"0.5,0.5\" data-load=\"false\" data-image-id=\"6172ca5c07fbe94552d3ea91\" data-type=\"image\" \/><\/p>\n<\/div>\n<\/div>\n<\/figure>\n<\/div>\n<div class=\"sqs-html-content\">\n<h2 style=\"white-space: pre-wrap;\"><strong>Conclusi\u00f3n<\/strong><\/h2>\n<p class=\"\" style=\"white-space: pre-wrap;\">La Sesi\u00f3n de Escucha de Pacientes sobre HO tuvo lugar de 13:30 a 15:00 ET el 22 de octubre de 2021. El panel de ponentes respondi\u00f3 a las preguntas de los asistentes. En general, la sesi\u00f3n cont\u00f3 con una buena asistencia y el panel consider\u00f3 positivo que se cubrieran todos los puntos clave en torno a los retos de esta enfermedad.<\/p>\n<\/div>\n<figure class=\"block-animation-none\">\n<blockquote data-animation-role=\"quote\"><p>\"Organizar esta Sesi\u00f3n de Escucha de Pacientes fue una gran oportunidad para compartir nuestras experiencias \"en las trincheras\" luchando contra la obesidad hipotal\u00e1mica directamente con las personas que tomar\u00e1n las decisiones sobre futuros tratamientos. Hacer que la FDA comprenda lo profundamente que estos retos afectan a nuestra vida diaria, al tiempo que se ponen rostros a esta enfermedad, s\u00f3lo puede ayudar a aumentar las oportunidades de investigaci\u00f3n, tratamientos y, con suerte, una cura.\"<\/blockquote><figcaption class=\"source\">- Amy Wood, Directora Ejecutiva de RAWF<\/figcaption><\/figure>\n<div class=\"sqs-html-content\">\n<p class=\"\" style=\"white-space: pre-wrap;\">\n<h2 style=\"white-space: pre-wrap;\"><strong>Escuchar al paciente<\/strong><\/h2>\n<p class=\"\" style=\"white-space: pre-wrap;\">La Fundaci\u00f3n Raymond A. Wood ha preparado un resumen que se encuentra actualmente en el sitio web de la FDA. Adem\u00e1s, organizamos un seminario web para recapitular la reuni\u00f3n. La RAWF seguir\u00e1 trabajando para concienciar sobre la HO y abogar por futuros tratamientos.<\/p>\n<\/div>","protected":false},"excerpt":{"rendered":"<p>La Fundaci\u00f3n Raymond A. Wood (RAWF), cuya misi\u00f3n es capacitar a los supervivientes de tumores cerebrales hipotal\u00e1mico-hipofisarios ... <a title=\"La RAWF organiza una sesi\u00f3n de escucha de pacientes sobre HO\" class=\"read-more\" href=\"https:\/\/www.rawoodfoundation.org\/es\/2021\/10\/22\/2021-10-22-raymond-a-wood-foundation-hosts-patient-listening-session-on-hypothalamic-obesity\/\" aria-label=\"Leer m\u00e1s sobre RAWF organiza una sesi\u00f3n de escucha de pacientes sobre HO\">Seguir leyendo<\/a><\/p>","protected":false},"author":6,"featured_media":118,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[41,29],"tags":[37],"class_list":["post-117","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-advocacy","category-hypothalamic-obesity","tag-news","generate-columns","tablet-grid-50","mobile-grid-100","grid-parent","grid-33","no-featured-image-padding"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.3 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>RAWF Hosts Patient Listening Session on HO - Raymond A. 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