{"id":8775,"date":"2023-11-17T15:13:32","date_gmt":"2023-11-17T15:13:32","guid":{"rendered":"https:\/\/www.rawoodfoundation.org\/?p=8775"},"modified":"2023-11-17T15:24:26","modified_gmt":"2023-11-17T15:24:26","slug":"recapitulacion-de-la-conferencia-familiar-sobre-tumores-cerebrales-hipofisarios-2023-defensa-de-la-conexion-y-el-crecimiento","status":"publish","type":"post","link":"https:\/\/www.rawoodfoundation.org\/es\/2023\/11\/17\/recap-pituitary-brain-tumor-family-conference-2023-advocacy-connection-and-growth\/","title":{"rendered":"Recapitulaci\u00f3n: Conferencia Familiar sobre Tumores Cerebrales Hipofisarios 2023 - Defensa, conexi\u00f3n y crecimiento"},"content":{"rendered":"

Visi\u00f3n general<\/strong><\/h3>\n\n\n\n

En el coraz\u00f3n de Filadelfia, la Fundaci\u00f3n Raymond A. Wood organiz\u00f3 la 5\u00aa Conferencia Anual de Familias sobre Tumores Cerebrales Hipofisarios 2023 en el Hospital Infantil de Filadelfia, encarnando un compromiso compartido con la defensa, la conexi\u00f3n y el crecimiento personal. Cuidadores, supervivientes y expertos se reunieron para explorar los \u00faltimos conocimientos sobre los trastornos neuroendocrinos que pueden derivarse de los tumores cerebrales hipotal\u00e1mico-hipofisarios, creando un vibrante tapiz de experiencias compartidas. Este fue el primer evento en persona desde 2019.<\/p>\n\n\n\n

\"Una<\/figure>\n\n\n\n

<\/p>\n\n\n\n

Presentaciones y oradores<\/strong><\/h3>\n\n\n\n

La conferencia comenz\u00f3 con una c\u00e1lida bienvenida del Dr. Craig Alter, del Hospital Infantil de Filadelfia, y Amy Wood, de la Fundaci\u00f3n Raymond A. Wood. La Dra. Soma Sengupta, distinguida figura de la Facultad de Medicina de la UNC, marc\u00f3 la pauta con una ponencia sobre medicina integrativa, en la que ofreci\u00f3 una perspectiva \u00fanica desde el punto de vista tanto del paciente como del cuidador. El Dr. Craig Alter llev\u00f3 a los asistentes a un exhaustivo recorrido por las hormonas en \"Pituitaria 101\", mientras que la Dra. Shana McCormack comparti\u00f3 los \u00faltimos hallazgos en ensayos cl\u00ednicos e investigaci\u00f3n. Marci Serota, dietista titulada, habl\u00f3 de la gesti\u00f3n nutricional de la obesidad hipotal\u00e1mica. La Dra. Meredith E. MacGregor abord\u00f3 cuestiones sociales, y el panel sobre sustituci\u00f3n de hormonas sexuales, en el que participaron el Dr. Chris Gibson y la Dra. Iris Gutmark-Little, arroj\u00f3 luz sobre esta parte del viaje del paciente. La primera jornada concluy\u00f3 con una demostraci\u00f3n pr\u00e1ctica dirigida por la Dra. Julia Crowley, que ofreci\u00f3 una visi\u00f3n pr\u00e1ctica de la administraci\u00f3n de esteroides en dosis de estr\u00e9s, y el panel de control de calidad, en el que participaron los ponentes del d\u00eda.<\/p>\n\n\n\n

El segundo d\u00eda, la Dra. Nathalie Kayadjanian analiz\u00f3 \"El qu\u00e9 y el por qu\u00e9 de un registro de pacientes\", arrojando luz sobre la importancia de recopilar datos exhaustivos de los pacientes. La ma\u00f1ana continu\u00f3 con una mesa redonda de supervivientes y cuidadores, que ofreci\u00f3 una plataforma de debate abierto sobre las experiencias de cuidadores y pacientes, las prioridades de la investigaci\u00f3n y la gesti\u00f3n de la enfermedad.<\/p>\n\n\n\n

\"Victoria<\/figure>\n\n\n\n

Valerie Crabtree, doctora del St. Jude Children's Research Hospital, nos habla de los retos y enfoques del sue\u00f1o.<\/em><\/p>\n\n\n\n

<\/p>\n\n\n\n

Catering para la salud: Un men\u00fa adaptado a las necesidades del paciente<\/strong><\/h3>\n\n\n\n

Uno de los aspectos m\u00e1s destacados de la conferencia fue un men\u00fa meticulosamente elaborado para satisfacer las necesidades diet\u00e9ticas espec\u00edficas de los pacientes con obesidad hipotal\u00e1mica. Este esfuerzo culinario se elabor\u00f3 de acuerdo con las directrices nutricionales explicadas por Marci Serota. El men\u00fa no s\u00f3lo ofrec\u00eda opciones deliciosas y nutritivas, sino que tambi\u00e9n subrayaba el compromiso con la atenci\u00f3n hol\u00edstica. Los asistentes con necesidades diet\u00e9ticas especiales se sintieron c\u00f3modos y satisfechos al saber que sus necesidades nutricionales no s\u00f3lo se ten\u00edan en cuenta, sino que se les daba prioridad, lo que contribuy\u00f3 a que la conferencia fuera una experiencia integradora y solidaria.<\/p>\n\n\n\n

\"Hora<\/figure>\n\n\n\n

Durante el fin de semana se sirvieron comidas para todos los p\u00fablicos.<\/em><\/p>\n\n\n\n

Hechos destacados y conclusiones<\/strong><\/h3>\n\n\n\n

La conferencia mostr\u00f3 la experiencia de ponentes de renombre, proporcionando una plataforma para que los asistentes conectaran tanto con expertos como entre s\u00ed. Los paneles de preguntas y respuestas y las demostraciones pr\u00e1cticas enriquecieron la experiencia, mientras que los debates sobre la investigaci\u00f3n de la obesidad hipotal\u00e1mica dejaron entrever un futuro prometedor para el tratamiento.<\/p>\n\n\n\n

Asistentes y creaci\u00f3n de redes<\/strong><\/h3>\n\n\n\n

Sesenta asistentes presenciales, incluidos participantes internacionales, y 53 asistentes virtuales, entre ellos representantes de la Fundaci\u00f3n Raymond A. Wood (RAWF) y patrocinadores como Rhythm Pharmaceuticals y LG Chem, crearon un din\u00e1mico entorno de trabajo en red. Una sala dedicada a los ni\u00f1os ofreci\u00f3 actividades como yoga y manualidades, fomentando el sentido de comunidad entre los j\u00f3venes supervivientes y sus familiares.<\/p>\n\n\n\n

\"Grupo<\/figure>\n\n\n\n

Los supervivientes conectan durante la conferencia.<\/em><\/p>\n\n\n\n

Sesiones interactivas y feedback<\/strong><\/h3>\n\n\n\n

La participaci\u00f3n floreci\u00f3 con sesiones de preguntas y respuestas y un panel de supervivientes y cuidadores. Los valiosos comentarios de los asistentes expresaron el deseo de disponer de m\u00e1s tiempo para preguntas, presentaciones sobre consideraciones relativas al tratamiento y sugerencias de sesiones divididas por niveles de experiencia y grupos de edad.<\/p>\n\n\n\n

Implicaciones futuras<\/strong><\/h3>\n\n\n\n

De cara al futuro, esperamos que mejoren los resultados del tratamiento y proponemos una investigaci\u00f3n m\u00e1s centrada en los aspectos psicosociales de este grupo de pacientes. Somos optimistas en cuanto a los avances en el tratamiento de la obesidad hipotal\u00e1mica, y la creaci\u00f3n de un registro de pacientes por parte de RAWF ofrecer\u00e1 m\u00e1s oportunidades de investigaci\u00f3n en torno a las prioridades de los pacientes. Los planes incluyen la celebraci\u00f3n de conferencias presenciales cada dos a\u00f1os, asegurando un apoyo y una educaci\u00f3n sostenidos para la creciente comunidad neuroendocrina.<\/p>\n\n\n\n

La conferencia destaca la importancia de la defensa, la colaboraci\u00f3n y la esperanza, tejiendo una narrativa de resiliencia compartida y progreso en el \u00e1mbito de los tumores cerebrales hipofisarios. Estamos muy agradecidos a nuestros patrocinadores por hacerlo posible, a nuestros ponentes por compartir su experiencia y su tiempo y a nuestra comunidad de pacientes por reunirse en este evento.<\/p>\n\n\n\n

<\/p>\n\n\n\n

\n
\"Superviviente<\/figure>\n\n\n\n
\"Superviviente<\/figure>\n\n\n\n
\"Una<\/figure>\n\n\n\n
\"Una<\/figure>\n\n\n\n
\"Conferencia<\/figure>\n\n\n\n
\"Ni\u00f1os<\/figure>\n\n\n\n
\"\"<\/figure>\n<\/figure>\n\n\n\n
\n\n\n\nApoye nuestro trabajo Haz un donativo hoy mismo.<\/a>","protected":false},"excerpt":{"rendered":"

Overview En el coraz\u00f3n de Filadelfia, la Fundaci\u00f3n Raymond A. Wood acogi\u00f3 la 5\u00aa ... Seguir leyendo<\/a><\/p>","protected":false},"author":4,"featured_media":8779,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[40,8,30],"tags":[],"class_list":["post-8775","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-education","category-events","category-rawf-news","generate-columns","tablet-grid-50","mobile-grid-100","grid-parent","grid-33","no-featured-image-padding"],"acf":[],"yoast_head":"\nRecap: Pituitary Brain Tumor Family Conference 2023 - Advocacy, Connection, and Growth - Raymond A. 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