\u00cen cadrul evenimentului de s\u00e2mb\u0103t\u0103, dedicat Zilei Interna\u021bionale a Bolilor Rare, ministrul S\u0103n\u0103t\u0103\u021bii a participat la Conferin\u021ba Na\u021bional\u0103 de Mastocitoz\u0103 \u0219i Boli Mastocitare (MCAS), desf\u0103\u0219urat\u0103 la Spitalul Universitar de Urgen\u021b\u0103 Bucure\u0219ti. Aceast\u0103 conferin\u021b\u0103 reprezint\u0103 un moment semnificativ at\u00e2t pentru pacien\u021bii afecta\u021bi de mastocitoz\u0103, c\u00e2t \u0219i pentru progresele medicinei rom\u00e2ne\u0219ti.<\/p>\n
Ministrul a anun\u021bat c\u0103, \u00een timpul conferin\u021bei, au fost prezentate ini\u021biative importante precum \u201eRegistrul Electronic Na\u021bional de Mastocitoz\u0103\u201d, Ghidul na\u021bional de mastocitoz\u0103 \u0219i Re\u021beaua de Mastocitoz\u0103. Aceste resurse sunt menite s\u0103 \u00eembun\u0103t\u0103\u021beasc\u0103 diagnosticul \u0219i tratamentul acestei afec\u021biuni rare.<\/p>\n
Rogobete a subliniat complexitatea mastocitozei, eviden\u021biind necesitatea unei abord\u0103ri interdisciplinare \u0219i a unei expertize \u00eenalt specializate pentru gestionarea ei. Expertiza din Rom\u00e2nia \u00een acest domeniu este concentrat\u0103 la Centrul European de Excelen\u021b\u0103 \u00een Mastocitoz\u0103, situat tot la Spitalul Universitar de Urgen\u021b\u0103 Bucure\u0219ti.<\/p>\n
\u00cen leg\u0103tur\u0103 cu Registrul Electronic de Mastocitoz\u0103, ministrul a declarat: \u201eAcest registru este un instrument \u0219tiin\u021bific crucial, care furnizeaz\u0103 date reale despre pacien\u021bi, evolu\u021bia bolii \u0219i eficacitatea terapiilor. F\u0103r\u0103 aceste informa\u021bii, este imposibil s\u0103 formul\u0103m politici publice solide. Dispun\u00e2nd de date corecte, putem fundamenta deciziile, inclusiv \u00een privin\u021ba includerii de noi medicamente \u00een lista celor compensate\u201d.<\/p>\n
Referitor la Re\u021beaua de Mastocitoz\u0103, ministrul a explicat c\u0103 aceasta faciliteaz\u0103 coordonarea, oferind trasee clare pentru pacien\u021bi \u0219i acces la centre de excelen\u021b\u0103 unde se g\u0103se\u0219te expertiz\u0103 superioar\u0103. \u201e\u00cen cazul bolilor rare, concentrarea competen\u021bei poate salva timp, reduce suferin\u021ba \u0219i, \u00een unele cazuri, chiar vie\u021bi\u201d, a ad\u0103ugat el.<\/p>\n
Ministrul S\u0103n\u0103t\u0103\u021bii a reafirmat angajamentul s\u0103u de a sus\u021bine \u201econsolidarea centrelor de excelen\u021b\u0103 \u00een bolile rare, dezvoltarea registrelor na\u021bionale \u0219i extinderea accesului la terapii inovatoare pentru pacien\u021bii cu mastocitoz\u0103\u201d.<\/p>\n
\u201eParteneriatul dintre autorit\u0103\u021bi, profesioni\u0219ti din domeniu \u0219i asocia\u021biile de pacien\u021bi este esen\u021bial pentru a crea politici publice care s\u0103 r\u0103spund\u0103 cu adev\u0103rat nevoilor oamenilor\u201d, a concluzionat Rogobete.<\/p>\n","protected":false},"excerpt":{"rendered":"
\u00cen cadrul evenimentului de s\u00e2mb\u0103t\u0103, dedicat Zilei Interna\u021bionale a Bolilor Rare, ministrul S\u0103n\u0103t\u0103\u021bii a participat la Conferin\u021ba Na\u021bional\u0103 de Mastocitoz\u0103 \u0219i Boli Mastocitare (MCAS), desf\u0103\u0219urat\u0103 la Spitalul Universitar de Urgen\u021b\u0103 Bucure\u0219ti. Aceast\u0103 conferin\u021b\u0103 reprezint\u0103 un moment semnificativ at\u00e2t pentru pacien\u021bii afecta\u021bi de mastocitoz\u0103, c\u00e2t \u0219i pentru progresele medicinei rom\u00e2ne\u0219ti. Ministrul a anun\u021bat c\u0103, \u00een timpul […]<\/p>\n","protected":false},"author":2,"featured_media":5744,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"jnews-multi-image_gallery":[],"jnews_single_post":[],"jnews_primary_category":[],"jnews_override_counter":[],"footnotes":""},"categories":[39],"tags":[8613,8608,8611,8607,8610,8612,8609,8606],"class_list":["post-5743","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-stirile-zilei","tag-abordare-interdisciplinara","tag-conferinta-nationala","tag-ghidul-national-de-mastocitoza","tag-mastocitoza","tag-registrul-electronic-national","tag-reteaua-de-mastocitoza","tag-spitalul-universitar-de-urgenta-bucuresti","tag-ziua-internationala-a-bolilor-rare"],"_links":{"self":[{"href":"https:\/\/www.newsrecorder.ro\/app\/wp-json\/wp\/v2\/posts\/5743","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.newsrecorder.ro\/app\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.newsrecorder.ro\/app\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.newsrecorder.ro\/app\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/www.newsrecorder.ro\/app\/wp-json\/wp\/v2\/comments?post=5743"}],"version-history":[{"count":0,"href":"https:\/\/www.newsrecorder.ro\/app\/wp-json\/wp\/v2\/posts\/5743\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.newsrecorder.ro\/app\/wp-json\/wp\/v2\/media\/5744"}],"wp:attachment":[{"href":"https:\/\/www.newsrecorder.ro\/app\/wp-json\/wp\/v2\/media?parent=5743"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.newsrecorder.ro\/app\/wp-json\/wp\/v2\/categories?post=5743"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.newsrecorder.ro\/app\/wp-json\/wp\/v2\/tags?post=5743"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}