{"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\/sv\/personalized-medicine-coalition-congressional-briefing-lobbying\/","title":{"rendered":"Personalized Medicine Coalition Kongressbriefing & lobbying"},"content":{"rendered":"

Emily Kramer-Golinkoff \u00e5ker till Washington! Emily vinkade hej till Vita huset, som hon bes\u00f6kte n\u00e5gra g\u00e5nger f\u00f6rra \u00e5ret, och \u00e5kte till Washington Hill f\u00f6rra veckan f\u00f6r att lobba senatorer, deras personal och andra beslutsfattare om de akuta, icke tillgodosedda behoven av individanpassad medicin f\u00f6r personer med s\u00e4llsynta sjukdomar som cystisk fibros.<\/span><\/p>\n

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Emily b\u00f6rjade sin dag i den amerikanska senatens Kennedy Caucus Room, d\u00e4r hon satt i en panel som organiserades av Personalized Medicine Coalition tillsammans med representanter fr\u00e5n l\u00e4kemedels- och diagnostikindustrin. \u00c4mnet var hur personanpassad medicin kan fr\u00e4mja innovation och f\u00f6rb\u00e4ttra kvaliteten p\u00e5 h\u00e4lso- och sjukv\u00e5rden och s\u00e4nka kostnaderna, och vilken offentlig politik som kan p\u00e5skynda eller h\u00e4mma utvecklingen inom omr\u00e5det.<\/span><\/p>\n

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Senator Ed Markey fr\u00e5n Massachusetts (kolla in honom p\u00e5 podiet!) h\u00f6ll huvudanf\u00f6randet vid informationsm\u00f6tet. Som paneldeltagare understr\u00f6k Emily budskapet att riktade terapier \u00e4r det enda hoppet om en framtid f\u00f6r patienter som hon och ber\u00e4ttade om det banbrytande arbete som Emily's Entourage utf\u00f6r f\u00f6r att fr\u00e4mja precisionsmedicin f\u00f6r s\u00e4llsynta nonsensmutationer vid cystisk fibros. Edward Abrahams, ordf\u00f6rande f\u00f6r Personalized Medicine Coalition, avslutade samtalet med en livlig fr\u00e5gestund<\/span><\/p>\n

P\u00e5 eftermiddagen fortsatte Emily samtalet med personal fr\u00e5n senatens utskott f\u00f6r h\u00e4lsa, utbildning, arbete och pensioner (HELP), d\u00e4r de diskuterade folkh\u00e4lsopolitik med fokus p\u00e5 FDA. Hon tr\u00e4ffade sedan senator Bob Casey fr\u00e5n hennes hemstat Pennsylvania och hans h\u00e4lsov\u00e5rdspersonal. <\/span><\/p>\n

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Emily hoppas att hennes tid p\u00e5 kongressen gav ett m\u00e4nskligt ansikte \u00e5t l\u00f6ftet om individanpassad medicin och den otroliga m\u00f6jlighet som ligger framf\u00f6r oss. P\u00e5 ett personligt plan var det en upplysande dag - den ultimata snabbkursen i folkh\u00e4lsopolitik - och en ov\u00e4rderlig m\u00f6jlighet att dela med sig av de fantastiska framsteg som EE g\u00f6r som det ultimata f\u00f6rkroppsligandet av individanpassad medicin i praktiken. <\/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

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L\u00e4s mer om<\/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_robots_primary_cat":"","_seopress_titles_title":"","_seopress_titles_desc":"","_seopress_robots_index":"","_monsterinsights_skip_tracking":false,"_monsterinsights_sitenote_active":false,"_monsterinsights_sitenote_note":"","_monsterinsights_sitenote_category":0,"_jetpack_memberships_contains_paid_content":false,"footnotes":""},"categories":[1],"tags":[],"class_list":["post-5874","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-uncategorized"],"acf":[],"jetpack_featured_media_url":"https:\/\/www.emilysentourage.org\/wp-content\/uploads\/IMG_2811-2.jpg","jetpack_sharing_enabled":true,"post_mailing_queue_ids":[],"_links":{"self":[{"href":"https:\/\/www.emilysentourage.org\/sv\/wp-json\/wp\/v2\/posts\/5874","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.emilysentourage.org\/sv\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.emilysentourage.org\/sv\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.emilysentourage.org\/sv\/wp-json\/wp\/v2\/users\/750"}],"replies":[{"embeddable":true,"href":"https:\/\/www.emilysentourage.org\/sv\/wp-json\/wp\/v2\/comments?post=5874"}],"version-history":[{"count":2,"href":"https:\/\/www.emilysentourage.org\/sv\/wp-json\/wp\/v2\/posts\/5874\/revisions"}],"predecessor-version":[{"id":5882,"href":"https:\/\/www.emilysentourage.org\/sv\/wp-json\/wp\/v2\/posts\/5874\/revisions\/5882"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.emilysentourage.org\/sv\/wp-json\/wp\/v2\/media\/5880"}],"wp:attachment":[{"href":"https:\/\/www.emilysentourage.org\/sv\/wp-json\/wp\/v2\/media?parent=5874"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.emilysentourage.org\/sv\/wp-json\/wp\/v2\/categories?post=5874"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.emilysentourage.org\/sv\/wp-json\/wp\/v2\/tags?post=5874"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}