{"id":12478,"date":"2019-03-26T14:53:39","date_gmt":"2019-03-26T18:53:39","guid":{"rendered":"https:\/\/www.emilysentourage.org\/?p=12478"},"modified":"2019-03-26T14:53:39","modified_gmt":"2019-03-26T18:53:39","slug":"ee-heads-to-d-c-for-health-datapalooza-2019","status":"publish","type":"post","link":"https:\/\/www.emilysentourage.org\/tr\/ee-heads-to-d-c-for-health-datapalooza-2019\/","title":{"rendered":"EE, Health Datapalooza 2019 i\u00e7in D.C.'ye Gidiyor"},"content":{"rendered":"

Emily's Entourage (EE) 27 Mart'ta Health Datapalooza 2019'a kat\u0131lmak \u00fczere Washington, D.C.'ye gidiyor. EE'nin kurucu orta\u011f\u0131 Emily, ana sahnedeki a\u00e7\u0131l\u0131\u015f oturumu paneline kat\u0131lacak ve burada EE'nin ortaya \u00e7\u0131k\u0131\u015f hikayesini ve di\u011fer hasta ve hasta bak\u0131c\u0131lara y\u00f6nelik tavsiyelerini payla\u015facak. Bu toplant\u0131, sa\u011fl\u0131k hizmetlerini ba\u015far\u0131l\u0131 bir \u015fekilde kesintiye u\u011fratan veya yeniden tasarlayan hastalar\u0131 ve bak\u0131c\u0131lar\u0131 vurgulamay\u0131 ama\u00e7lamaktad\u0131r.<\/p>\n

\"\"<\/p>\n

2010'dan beri, Sa\u011fl\u0131k Datapalooza<\/a> sa\u011fl\u0131k verilerinden bilgi \u00fcreten ve sa\u011fl\u0131k politikalar\u0131n\u0131 ve uygulamalar\u0131n\u0131 h\u0131zland\u0131ran yenilikler yaratan ki\u015fi ve kurulu\u015flar i\u00e7in ana bulu\u015fma yeri haline gelmi\u015ftir. \u0130ki g\u00fcn boyunca federal politika yap\u0131c\u0131lar, sa\u011fl\u0131k sistemleri genel m\u00fcd\u00fcrleri, Silikon Vadisi giri\u015fimleri ve hastalarla bir araya gelecek. Sa\u011fl\u0131k hizmetlerinin kar\u015f\u0131 kar\u015f\u0131ya oldu\u011fu zorluklar ilerlemeye devam ederken, b\u00fcy\u00fck d\u00fc\u015f\u00fcn\u00fcrler ve kendin-yap\u00e7\u0131lardan olu\u015fan bu \u00e7e\u015fitli grup tek bir misyonla i\u015fbirli\u011fi yapacak; verileri kullanarak sa\u011fl\u0131k hizmetlerini ilerletmek ve kurtarmak.<\/p>\n

Emily, \"Kendi Sa\u011fl\u0131\u011f\u0131n\u0131z\u0131n Kontrol\u00fcn\u00fc Elinize Al\u0131n\" ba\u015fl\u0131kl\u0131 ana sahne a\u00e7\u0131l\u0131\u015f panelinde, hastalar\u0131n ve ailelerin kendileri i\u00e7in herhangi bir tedavi se\u00e7ene\u011fi olmad\u0131\u011f\u0131nda kontrol\u00fc nas\u0131l ele alabilecekleri hakk\u0131nda konu\u015facak. Kistik Fibrozis (KF) hastalar\u0131n\u0131n yakla\u015f\u0131k 90%'si i\u00e7in oyunun kurallar\u0131n\u0131 de\u011fi\u015ftiren at\u0131l\u0131mlar ufukta g\u00f6r\u00fcn\u00fcrken, Emily ve ailesi KF'nin sa\u00e7ma mutasyonlar\u0131na sahip ki\u015filerin geride b\u0131rak\u0131ld\u0131\u011f\u0131n\u0131 fark etti.<\/p>\n

Sekiz y\u0131l sonra, EE ara\u015ft\u0131rmalara $3.5 milyondan fazla \u00f6d\u00fcl verdi ve \u015fu anda 11 aktif projeye sahip, hepsi de hi\u00e7bir \u015fey olmadan 10%'de sa\u00e7ma mutasyonlar\u0131 olanlar i\u00e7in hayat kurtaran terap\u00f6tikler geli\u015ftirmek gibi tek bir hedefe sahip. S\u00f6yle\u015finin bir par\u00e7as\u0131 olarak Emily, EE'nin daha \u00f6nce pek bir \u015fey olmayan bir alanda ila\u00e7 geli\u015ftirmeyi te\u015fvik etmek i\u00e7in nas\u0131l yorulmadan \u00e7al\u0131\u015ft\u0131\u011f\u0131na de\u011finecek ve EE'nin yol boyunca kar\u015f\u0131la\u015ft\u0131\u011f\u0131 ba\u015far\u0131lardan ve zorluklardan bahsedecek.<\/p>\n

\"\"<\/p>\n

Emily'ye, d\u00f6n\u00fc\u015f\u00fcmsel bir d\u00fc\u015f\u00fcnce lideri, nadir bir otonomik-adrenal rahats\u0131zl\u0131\u011f\u0131 olan hasta ve Stanford Medicine X'ten arkada\u015f\u0131 Doug Lindsay kat\u0131larak, her birinin kendi sa\u011fl\u0131k durumlar\u0131n\u0131n sorumlulu\u011funu nas\u0131l \u00fcstlendiklerini ve hasta savunucular\u0131 haline geldiklerini tart\u0131\u015facak. S\u00f6yle\u015finin moderat\u00f6rl\u00fc\u011f\u00fcn\u00fc Apple Health'in eski y\u00f6neticisi ve \u015fu anki kurucusu ve CEO'su Anil Sethi yapacak. Ciitizen<\/a>hastalar\u0131n kendi sa\u011fl\u0131k verileri \u00fczerinde tam kontrol sahibi olmalar\u0131n\u0131 sa\u011flamaya odaklanan bir start-up.<\/p>\n

Emily's Entourage, KF'nin sa\u00e7ma mutasyonlar\u0131 i\u00e7in yap\u0131lan kritik \u00e7al\u0131\u015fmalar hakk\u0131nda fark\u0131ndal\u0131k yaratmak i\u00e7in Health Datapalooza 2019'da b\u00f6ylesine geni\u015f bir platforma sahip oldu\u011fu i\u00e7in inan\u0131lmaz derecede minnettar ve i\u00e7g\u00f6r\u00fclerimizi ve deneyimlerimizi payla\u015fmay\u0131, ba\u015fkalar\u0131ndan \u00f6\u011frenmeyi ve ortakl\u0131klar ve i\u015fbirlikleri kurmay\u0131 d\u00f6rt g\u00f6zle bekliyor.<\/p>","protected":false},"excerpt":{"rendered":"

On March 27, Emily\u2019s Entourage (EE) heads to Washington, D.C. to attend Health Datapalooza 2019. Emily, EE co-founder, will participate in the mainstage opening session panel, where she will share the EE origin story and advice for other patients and caregivers. This convening is meant to highlight the patients and caregivers who have successfully disrupted… <\/p>\n

<\/div>\n

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