{"id":5874,"date":"2017-03-27T00:38:00","date_gmt":"2017-03-27T04:38:00","guid":{"rendered":"https:\/\/www.emilysentourage.org\/?p=5874"},"modified":"2018-02-14T12:34:07","modified_gmt":"2018-02-14T17:34:07","slug":"personalized-medicine-coalition-congressional-briefing-lobbying","status":"publish","type":"post","link":"https:\/\/www.emilysentourage.org\/es\/personalized-medicine-coalition-congressional-briefing-lobbying\/","title":{"rendered":"Sesi\u00f3n informativa y cabildeo del Congreso de la Coalici\u00f3n de medicina personalizada"},"content":{"rendered":"

\u00a1La Sra. Kramer-Golinkoff va a Washington! Saludando a la Casa Blanca que visit\u00f3 varias veces el a\u00f1o pasado, Emily se dirigi\u00f3 a Hill la semana pasada para presionar a los senadores, su personal y otros legisladores sobre las necesidades urgentes e insatisfechas en medicina personalizada para aquellos con enfermedades raras como la fibrosis qu\u00edstica.<\/span><\/p>\n

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Emily comenz\u00f3 su d\u00eda en el Kennedy Caucus Room del Senado de los Estados Unidos, sentada en un panel organizado por la Coalici\u00f3n de Medicina Personalizada junto a representantes de las industrias farmac\u00e9utica y de diagn\u00f3stico. El tema en cuesti\u00f3n era c\u00f3mo la medicina personalizada puede fomentar la innovaci\u00f3n y mejorar la calidad de la atenci\u00f3n m\u00e9dica y reducir los costos, y qu\u00e9 pol\u00edticas p\u00fablicas pueden acelerar o sofocar el desarrollo del campo.<\/span><\/p>\n

\"\"<\/p>\n

El senador Ed Markey de Massachusetts (\u00a1compru\u00e9belo en el podio!) Pronunci\u00f3 el discurso de apertura en la sesi\u00f3n informativa. Como panelista, Emily subray\u00f3 el mensaje de que las terapias dirigidas son la \u00fanica esperanza de futuro para pacientes como ella y comparti\u00f3 el trabajo pionero que Emily's Entourage est\u00e1 haciendo para promover la medicina de precisi\u00f3n para mutaciones raras sin sentido de la fibrosis qu\u00edstica. Edward Abrahams, presidente de la Coalici\u00f3n de Medicina Personalizada, concluy\u00f3 la charla con una animada sesi\u00f3n de preguntas y respuestas.<\/span><\/p>\n

Por la tarde, Emily continu\u00f3 la conversaci\u00f3n con el personal del Comit\u00e9 Senatorial de Salud, Educaci\u00f3n, Trabajo y Pensiones (HELP), donde discutieron la pol\u00edtica de salud p\u00fablica con un enfoque en la FDA. Luego se reuni\u00f3 con el senador Bob Casey de su estado natal de Pensilvania y su personal de atenci\u00f3n m\u00e9dica. <\/span><\/p>\n

\"\"<\/p>\n

Emily espera que su tiempo en Hill le haya dado un rostro humano a la promesa de la medicina personalizada y la incre\u00edble oportunidad que tenemos ante nosotros. A nivel personal, fue un d\u00eda esclarecedor - el \u00faltimo curso intensivo en pol\u00edtica de salud p\u00fablica - y una oportunidad invaluable para compartir los asombrosos avances que EE est\u00e1 logrando como la m\u00e1xima encarnaci\u00f3n de la medicina personalizada en acci\u00f3n. <\/span><\/p>","protected":false},"excerpt":{"rendered":"

Ms Kramer-Golinkoff goes to Washington! Waving hello to the White House she visited a few times last year, Emily headed to the Hill last week to lobby Senators, their staff and other policymakers on the urgent, unmet needs in personalized medicine for those with rare diseases like Cystic Fibrosis. Emily started her day in the… <\/p>\n

<\/div>\n

Lee mas<\/a><\/p>","protected":false},"author":750,"featured_media":5880,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_seopress_titles_title":"","_seopress_titles_desc":"","_seopress_robots_index":"","_seopress_robots_follow":"","_seopress_robots_imageindex":"","_seopress_robots_snippet":"","_seopress_robots_primary_cat":"","_seopress_robots_breadcrumbs":"","_seopress_robots_freeze_modified_date":"","_seopress_robots_custom_modified_date":"","_seopress_robots_canonical":"","_seopress_social_fb_title":"","_seopress_social_fb_desc":"","_seopress_social_fb_img":"","_seopress_social_fb_img_attachment_id":0,"_seopress_social_fb_img_width":0,"_seopress_social_fb_img_height":0,"_seopress_social_twitter_title":"","_seopress_social_twitter_desc":"","_seopress_social_twitter_img":"","_seopress_social_twitter_img_attachment_id":0,"_seopress_social_twitter_img_width":0,"_seopress_social_twitter_img_height":0,"_seopress_redirections_value":"","_seopress_redirections_enabled":"","_seopress_redirections_enabled_regex":"","_seopress_redirections_logged_status":"","_seopress_redirections_param":"","_seopress_redirections_type":0,"_seopress_analysis_target_kw":"","_monsterinsights_skip_tracking":false,"_jetpack_newsletter_access":"","_jetpack_dont_email_post_to_subs":false,"_jetpack_newsletter_tier_id":0,"_jetpack_memberships_contains_paywalled_content":false,"_jetpack_feature_clip_id":0,"_jetpack_memberships_contains_paid_content":false,"footnotes":"","jetpack_post_was_ever_published":false},"categories":[1],"tags":[],"class_list":["post-5874","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-uncategorized"],"acf":[],"jetpack_sharing_enabled":true,"jetpack_featured_media_url":"https:\/\/www.emilysentourage.org\/wp-content\/uploads\/IMG_2811-2.jpg","post_mailing_queue_ids":[],"_links":{"self":[{"href":"https:\/\/www.emilysentourage.org\/es\/wp-json\/wp\/v2\/posts\/5874","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.emilysentourage.org\/es\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.emilysentourage.org\/es\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.emilysentourage.org\/es\/wp-json\/wp\/v2\/users\/750"}],"replies":[{"embeddable":true,"href":"https:\/\/www.emilysentourage.org\/es\/wp-json\/wp\/v2\/comments?post=5874"}],"version-history":[{"count":2,"href":"https:\/\/www.emilysentourage.org\/es\/wp-json\/wp\/v2\/posts\/5874\/revisions"}],"predecessor-version":[{"id":5882,"href":"https:\/\/www.emilysentourage.org\/es\/wp-json\/wp\/v2\/posts\/5874\/revisions\/5882"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.emilysentourage.org\/es\/wp-json\/wp\/v2\/media\/5880"}],"wp:attachment":[{"href":"https:\/\/www.emilysentourage.org\/es\/wp-json\/wp\/v2\/media?parent=5874"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.emilysentourage.org\/es\/wp-json\/wp\/v2\/categories?post=5874"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.emilysentourage.org\/es\/wp-json\/wp\/v2\/tags?post=5874"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}