{"id":77,"date":"2020-07-27T13:55:47","date_gmt":"2020-07-27T13:55:47","guid":{"rendered":"https:\/\/live-rawf.pantheonsite.io\/2020\/07\/27\/2020-7-27-medical-monday-an-inspiring-story-of-mom-advocacy\/"},"modified":"2023-08-01T19:26:42","modified_gmt":"2023-08-01T19:26:42","slug":"2020-7-27-lunes-medico-una-historia-inspiradora-de-defensa-materna","status":"publish","type":"post","link":"https:\/\/www.rawoodfoundation.org\/es\/2020\/07\/27\/2020-7-27-medical-monday-an-inspiring-story-of-mom-advocacy\/","title":{"rendered":"Lunes m\u00e9dico: Una inspiradora historia de defensa materna"},"content":{"rendered":"<div class=\"sqs-html-content\">\n<p class=\"\" style=\"white-space:pre-wrap;\">El lunes m\u00e9dico de hoy destaca un podcast reciente producido por Eugenie Hsu, miembro de la junta directiva de RAWF y defensora de las madres, que entrevista a Maria Picone de <a href=\"https:\/\/trend.community\/\" target=\"_blank\" rel=\"noopener\">TENDENCIA<\/a>. <\/p>\n<p class=\"\" style=\"white-space:pre-wrap;\">Cuando le diagnosticaron a su hija una enfermedad rara, el s\u00edndrome de Prader Willi, Mar\u00eda puso toda su energ\u00eda en aprender todo lo posible para mejorar la calidad de vida de su hija. Gracias a su experiencia en programaci\u00f3n inform\u00e1tica, cre\u00f3 TREND, una organizaci\u00f3n que \"escucha\" las conversaciones en los grupos de apoyo de las redes sociales para determinar de qu\u00e9 se est\u00e1 hablando y produce an\u00e1lisis basados en esas conversaciones para ayudar a orientar la investigaci\u00f3n en el \u00e1mbito de las enfermedades raras. <\/p>\n<p class=\"\" style=\"white-space:pre-wrap;\">De este modo, la comunidad del SPW pudo determinar que en Europa se estaba utilizando un tratamiento para la narcolepsia, un problema que pueden padecer estos pacientes, y gracias a la defensa de sus derechos, los padres pudieron traer ese medicamento a EE.UU., que finalmente fue aprobado por la FDA para su uso en esta situaci\u00f3n.   <\/p>\n<p class=\"\" style=\"white-space:pre-wrap;\">Cuando se le pregunta qu\u00e9 aconsejar\u00eda a la gente para ser buenos defensores de los pacientes, Mar\u00eda dice: \"Creo que en realidad es seguir buscando personas que puedan ayudarte espec\u00edficamente y no asumir que encajas en esta caja. Los m\u00e9dicos no siempre saben lo que es posible\".  Escucha el podcast Dr. DIY con Maria Picone, directora general de TREND Community. <\/p>\n<p class=\"\" style=\"white-space:pre-wrap;\">Escuche el podcast:<\/p>\n<\/div>\n<div class=\"sqs-html-content\">\n<p class=\"\" style=\"white-space:pre-wrap;\">Escuche el podcast:<\/p>\n<\/div>\n<p><iframe allow=\"autoplay; fullscreen\" scrolling=\"no\" data-image-dimensions=\"400x102\" allowfullscreen=\"true\" src=\"\/\/cdn.embedly.com\/widgets\/media.html?src=https%3A%2F%2Fanchor.fm%2Feuge3%2Fembed%2Fepisodes%2FMaria-Picone--CEO-of-TREND-Community-eegrjc&amp;display_name=Anchor+FM+Inc.&amp;url=https%3A%2F%2Fanchor.fm%2Feuge3%2Fepisodes%2FMaria-Picone--CEO-of-TREND-Community-eegrjc&amp;image=https%3A%2F%2Fd3t3ozftmdmh3i.cloudfront.net%2Fproduction%2Fpodcast_uploaded_nologo400%2F2457471%2F2457471-1588791268864-5d3db99c84622.jpg&amp;key=61d05c9d54e8455ea7a9677c366be814&amp;type=text%2Fhtml&amp;schema=anchor&amp;wmode=opaque\" width=\"400\" data-embed=\"true\" frameborder=\"0\" title=\"Anchor FM Inc. embed\" class=\"embedly-embed\" height=\"102\"><\/iframe><\/p>\n<div  class=\"video-caption-wrapper\">\n<div class=\"video-caption\">\n<p>Maria Picone es defensora de los pacientes y cofundadora y consejera delegada de TREND Community, una empresa de salud digital cuya misi\u00f3n es mejorar la calidad de vida de todos los que viven con enfermedades raras y cr\u00f3nicas: WWW.TREND.Community TREND utiliza la tecnolog\u00eda para aprovechar los medios sociales con el fin de comprender mejor la carga de la enfermedad y acelera el descubrimiento y la administraci\u00f3n de nuevos tratamientos.<\/p>\n<\/div>\n<\/div>\n<div class=\"sqs-html-content\">\n<p class=\"\" style=\"white-space:pre-wrap;\">Puede consultar todos los <a href=\"https:\/\/open.spotify.com\/show\/2kN9S0V34blh7SC2fgmFqF\">Podcasts del Dr. DIY en Spotify<\/a>.<\/p>\n<\/div>","protected":false},"excerpt":{"rendered":"<p class=\"\">El lunes m\u00e9dico de hoy destaca un podcast reciente producido por Eugenie Hsu, miembro de la junta directiva de RAWF y defensora de las madres, que entrevista a Maria Picone de <a href=\"https:\/\/trend.community\/\" target=\"_blank\" rel=\"noopener\">TENDENCIA<\/a>.<\/p>","protected":false},"author":6,"featured_media":6705,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[41,36,1],"tags":[],"class_list":["post-77","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-advocacy","category-caregivers","category-uncategorized","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>Medical Monday: An Inspiring Story of Mom Advocacy - Raymond A. 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