{"id":5243,"date":"2023-05-16T18:26:54","date_gmt":"2023-05-16T18:26:54","guid":{"rendered":"https:\/\/live-rawf.pantheonsite.io\/?page_id=5243"},"modified":"2026-06-08T14:08:51","modified_gmt":"2026-06-08T14:08:51","slug":"nuestros-objetivos","status":"publish","type":"page","link":"https:\/\/www.rawoodfoundation.org\/es\/our-goals\/","title":{"rendered":"Patient\/Family Support Programs"},"content":{"rendered":"
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Tratamiento domiciliario del AVP-D adiposo en pacientes pedi\u00e1tricos con tumores cerebrales<\/h3>\n\n\n\n

<\/path><\/svg><\/span>P\u00f3ngase en contacto con nosotros<\/a><\/span><\/p>\n<\/div>\n\n\n\n

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La deficiencia de arginina vasopresina (AVP-D, diabetes ins\u00edpida) es una enfermedad rara y cr\u00f3nica en la que el hipot\u00e1lamo no produce vasopresina, tambi\u00e9n conocida como hormona antidiur\u00e9tica (ADH), que puede causar problemas de equilibrio de l\u00edquidos corporales y niveles de sodio en sangre fuera de rango, lo que resulta en hiponatremia (demasiado l\u00edquido en el cuerpo) o hipernatremia (demasiado poco l\u00edquido en el cuerpo). Cualquiera de estas afecciones puede causar convulsiones debilitantes, coma o ser mortal. <\/p>\n\n\n\n

AVP-D ad\u00edpico significa que el paciente no tiene un mecanismo de sed intacto. Los pacientes que han sido tratados por tumores cerebrales que provocan lesiones hipotal\u00e1micas pueden experimentar este problema, lo que hace que la AVP-D sea m\u00e1s dif\u00edcil de tratar. La terapia hormonal sustitutiva en forma de desmopresina (DDAVP) puede ser poco fiable a partir del d\u00eda a d\u00eda para ciertos pacientes.<\/p>\n\n\n\n

Determinar el sodio en pacientes pedi\u00e1tricos es especialmente dif\u00edcil. En la actualidad no existe ning\u00fan medidor de sodio que se pueda medir en casa. Los pacientes est\u00e1n sujetos a visitas al laboratorio, a veces varias veces por semana. En horas no laborables, cuando los laboratorios est\u00e1n cerrados, los pacientes tienen que someterse a pruebas en urgencias y ser ingresados si el nivel est\u00e1 fuera de rango. Las extracciones de sangre se realizan por v\u00eda venosa, lo que supone un reto para los ni\u00f1os. Los pacientes con diabetes ins\u00edpida central adiposa tendr\u00e1n que ser hospitalizados varias veces al a\u00f1o.<\/p>\n\n\n\n

Los analizadores de sangre port\u00e1tiles de calidad hospitalaria son la \u00fanica opci\u00f3n para que los cuidadores obtengan los niveles de sodio en casa. Proporcionan resultados de sodio con precisi\u00f3n de laboratorio en 5 minutos con un pinchazo en el dedo y 10-20 gotas de sangre. Estos dispositivos no est\u00e1n aprobados por la FDA para uso dom\u00e9stico, son costosos y no est\u00e1n cubiertos por los seguros. En el marco del uso compasivo de dispositivos m\u00e9dicos y con la orientaci\u00f3n de un m\u00e9dico, la Fundaci\u00f3n Raymond A. Wood (RAWF) ha proporcionado a 30 pacientes pedi\u00e1tricos y a sus familias analizadores de sangre port\u00e1tiles junto con los suministros necesarios. RAWF tambi\u00e9n ha formado a endocrin\u00f3logos pedi\u00e1tricos sobre la eficacia de estos dispositivos en la gesti\u00f3n del sodio.<\/p>\n<\/div>\n<\/div>\n\n\n\n

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Conferencia bianual sobre tumores cerebrales hipofisarios<\/h3>\n\n\n\n

<\/path><\/svg><\/span>Inscripci\u00f3n e informaci\u00f3n<\/span><\/p>\n<\/div>\n\n\n\n

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The Raymond A. Wood Foundation (RAWF) along with the Children\u2019s Hospital of Philadelphia (CHOP) neuroendocrine clinic hosts a bi-annual conference on medical, educational and social issues faced by hypothalamic-pituitary brain tumor survivors. <\/p>\n\n\n\n

Este evento re\u00fane a personas, cuidadores y expertos sanitarios, todos ellos dedicados a mejorar la vida de las personas afectadas por diversas afecciones m\u00e9dicas causadas por tumores cerebrales hipofisarios. Esta conferencia ofrece una oportunidad \u00fanica para entablar conversaciones significativas, compartir experiencias personales y conocer los \u00faltimos avances en tratamientos y cuidados. Desde los interesantes ponentes principales hasta las sesiones interactivas, las familias adquieren valiosos conocimientos sobre la gesti\u00f3n del viaje posterior al diagn\u00f3stico y el tratamiento. <\/p>\n<\/div>\n<\/div>\n\n\n\n

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Grupos de apoyo<\/h3>\n\n\n\n

<\/path><\/svg><\/span>Ver los pr\u00f3ximos eventos<\/a><\/span><\/p>\n<\/div>\n\n\n\n

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The Raymond A. Wood Foundation hosts monthly support groups for caregivers and survivors of hypothalamic-pituitary brain tumors. These virtual spaces are tailored to provide a safe haven to connect, share, and find solace amidst the challenges faced. Whether you are a survivors, or you’re caring for a family member, friend, or loved one, our online support groups offer a convenient platform to exchange experiences, glean insights, and seek guidance from others who are walking a similar path. Engage in meaningful discussions, access valuable resources, and gain emotional sustenance from the comfort of your home. These digital gatherings transcend geographical boundaries, fostering a sense of belonging and camaraderie that reinforces the idea that you’re not alone in your journey. Join our online support groups<\/a> and discover the power of a united caregiver community, available at your fingertips.<\/p>\n<\/div>\n<\/div>\n\n\n\n

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Educaci\u00f3n permanente<\/h3>\n\n\n\n

<\/path><\/svg><\/span>Ver los pr\u00f3ximos eventos<\/a>ents<\/a><\/span><\/p>\n<\/div>\n\n\n\n

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La Fundaci\u00f3n Raymond A. Wood cree que la educaci\u00f3n es la mejor herramienta para ayudar a nuestra comunidad de pacientes y cuidadores a convertirse en sus mejores defensores. <\/p>\n\n\n\n

RAWF ofrece seminarios web y v\u00eddeos educativos sobre temas de inter\u00e9s, desde investigaci\u00f3n, terapias emergentes y ensayos cl\u00ednicos actuales, hasta inmersiones profundas en la gesti\u00f3n de las afecciones derivadas de los tumores. Exploramos temas como la educaci\u00f3n especial, las habilidades sociales y los problemas de comportamiento.<\/p>\n\n\n\n

Los seminarios web se ofrecen con traducci\u00f3n hasta en 50 idiomas y muchos de nuestros v\u00eddeos educativos est\u00e1n traducidos al espa\u00f1ol.<\/p>\n\n\n\n

All of our educational content is available on our video hub. Get access here.<\/a><\/p>\n<\/div>\n<\/div>\n\n\n\n

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Navegador de pacientes en l\u00ednea<\/h3>\n<\/div>\n\n\n\n
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RAWF is currently working to develop a comprehensive online resource for information and to answer commonly asked questions about craniopharyngioma. Diagnosis of this tumor and management of care in the aftermath is daunting. There is currently no comprehensive resource that takes a deep dive into the common issues. This hub will be built on the WordPress platform and will provide an overview of treatment options, leading treating hospitals and physicians, current therapies including off-label options and prescribing doctors and a survivors\u2019 spotlight highlighting success stories of patients. The navigator is expected to launch by the end of 2024.<\/p>\n<\/div>\n<\/div>\n\n\n\n

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Apoye nuestros programas<\/h3>\n\n\n\n

Su apoyo puede tener un impacto duradero en nuestra misi\u00f3n, permiti\u00e9ndonos crear un cambio positivo y transformar las vidas de estos supervivientes de tumores cerebrales. \u00danase a nosotros en la defensa de esta causa, y juntos, podemos allanar el camino para un futuro m\u00e1s brillante, no s\u00f3lo para estos pacientes, sino para la investigaci\u00f3n del cerebro y el apoyo a los pacientes.<\/p>\n\n\n\n

<\/path><\/svg><\/span>Haz un donativo para impulsar nuestra misi\u00f3n<\/a><\/span><\/p>\n<\/div>\n<\/div>\n\n<\/div>","protected":false},"excerpt":{"rendered":"

At-Home Care Management of Adipsic AVP-D for Pediatric Brain Tumor Patients Contact us for an … Seguir leyendo<\/a><\/p>","protected":false},"author":1,"featured_media":0,"parent":0,"menu_order":96,"comment_status":"closed","ping_status":"closed","template":"","meta":{"_acf_changed":false,"footnotes":""},"class_list":{"0":"post-5243","1":"page","2":"type-page","3":"status-publish","5":"no-featured-image-padding"},"acf":[],"yoast_head":"\nPatient\/Family Support Programs - Raymond A. Wood Foundation<\/title>\n<meta name=\"description\" content=\"Discover the current programs taking place in Raymond A. 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