{"id":679227,"date":"2026-02-28T13:07:03","date_gmt":"2026-02-28T13:07:03","guid":{"rendered":"https:\/\/microscopemedia.com\/?p=679227"},"modified":"2026-02-28T13:07:03","modified_gmt":"2026-02-28T13:07:03","slug":"registrul-electronic-national-de-mastocitoza-si-reteaua-de-mastocitoza-lansate-la-suub","status":"publish","type":"post","link":"https:\/\/microscopemedia.com\/?p=679227","title":{"rendered":"Registrul Electronic Na\u021bional de Mastocitoz\u0103 \u0219i Re\u021beaua de Mastocitoz\u0103, lansate la SUUB"},"content":{"rendered":"<div><img decoding=\"async\" src=\"https:\/\/microscopemedia.com\/wp-content\/uploads\/2026\/02\/registrul-electronic-national-de-mastocitoza-si-reteaua-de-mastocitoza-lansate-la-suub.jpg\" class=\"ff-og-image-inserted\"><\/div>\n<p id=\"p-0\">\u201eAst\u0103zi (n.r.- s\u00e2mb\u0103t\u0103), de Ziua Interna\u021bional\u0103 a Bolilor Rare, am participat la Conferin\u021ba Na\u021bional\u0103 de Mastocitoz\u0103 \u0219i Boli Mastocitare (MCAS), organizat\u0103 la Spitalul Universitar de Urgen\u021b\u0103 Bucure\u0219ti \u2013 un eveniment care marcheaz\u0103 un pas important pentru pacien\u021bii cu aceast\u0103 boal\u0103 rar\u0103 \u0219i pentru medicina rom\u00e2neasc\u0103\u201d, a transmis ministrul.<\/p>\n<p id=\"p-1\">Potrivit acestuia, \u00een cadrul conferin\u021bei au fost lansate \u201eRegistrul Electronic Na\u021bional de Mastocitoz\u0103, Ghidul na\u021bional de mastocitoz\u0103 \u0219i prezentarea Re\u021belei de Mastocitoz\u0103\u201d.<\/p>\n<p id=\"p-2\">Rogobete a subliniat c\u0103 \u201emastocitoza este o boal\u0103 rar\u0103, complex\u0103, care necesit\u0103 abordare interdisciplinar\u0103 \u0219i expertiz\u0103 \u00eenalt specializat\u0103\u201d. Acesta a precizat c\u0103 expertiza din Rom\u00e2nia este concentrat\u0103 \u00een cadrul Centrului European de Excelen\u021b\u0103 \u00een Mastocitoz\u0103 Rom\u00e2nia, care func\u021bioneaz\u0103 la Spitalul Universitar de Urgen\u021b\u0103 Bucure\u0219ti.<\/p>\n<p id=\"p-3\">Referitor la noul registru, ministrul a afirmat: \u201eRegistrul Electronic de Mastocitoz\u0103 este un instrument \u0219tiin\u021bific esen\u021bial: ofer\u0103 date reale despre pacien\u021bi, despre evolu\u021bia bolii \u0219i despre eficacitatea terapiilor. F\u0103r\u0103 date, nu putem construi politici publice solide. Cu date corecte, putem fundamenta decizii, inclusiv pentru includerea de noi medicamente \u00een lista celor compensate\u201d,<\/p>\n<p id=\"p-4\">Despre Re\u021beaua de Mastocitoz\u0103, acesta a ar\u0103tat c\u0103 \u201e\u00eenseamn\u0103 coordonare, trasee clare pentru pacient \u0219i acces la centre de excelen\u021b\u0103 acolo unde expertiza este superioar\u0103\u201d, ad\u0103ug\u00e2nd c\u0103 \u201epentru bolile rare, concentrarea competen\u021bei salveaz\u0103 timp, suferin\u021b\u0103 \u0219i, uneori, vie\u021bi\u201d.<\/p>\n<p id=\"p-5\">Ministrul S\u0103n\u0103t\u0103\u021bii a declarat c\u0103 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<p id=\"p-6\">\u201eParteneriatul dintre autorit\u0103\u021bi, profesioni\u0219ti \u0219i asocia\u021biile de pacien\u021bi este esen\u021bial pentru a construi politici publice care r\u0103spund real nevoilor oamenilor\u201d, mai spune Rogobete.<\/p>\n","protected":false},"excerpt":{"rendered":"<p>\u201eAst\u0103zi (n.r.- s\u00e2mb\u0103t\u0103), de Ziua Interna\u021bional\u0103 a Bolilor Rare, am participat la Conferin\u021ba Na\u021bional\u0103 de Mastocitoz\u0103 \u0219i Boli Mastocitare (MCAS), organizat\u0103 la Spitalul Universitar de Urgen\u021b\u0103 Bucure\u0219ti \u2013 un eveniment &hellip; <a href=\"https:\/\/microscopemedia.com\/?p=679227\" class=\"more-link\">Read More<\/a><\/p>\n","protected":false},"author":1,"featured_media":679228,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"Default","format":"standard","meta":[],"categories":[1],"tags":[],"_links":{"self":[{"href":"https:\/\/microscopemedia.com\/index.php?rest_route=\/wp\/v2\/posts\/679227"}],"collection":[{"href":"https:\/\/microscopemedia.com\/index.php?rest_route=\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/microscopemedia.com\/index.php?rest_route=\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/microscopemedia.com\/index.php?rest_route=\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/microscopemedia.com\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=679227"}],"version-history":[{"count":0,"href":"https:\/\/microscopemedia.com\/index.php?rest_route=\/wp\/v2\/posts\/679227\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/microscopemedia.com\/index.php?rest_route=\/wp\/v2\/media\/679228"}],"wp:attachment":[{"href":"https:\/\/microscopemedia.com\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=679227"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/microscopemedia.com\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=679227"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/microscopemedia.com\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=679227"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}