{"id":822,"date":"2023-03-09T16:19:45","date_gmt":"2023-03-09T14:19:45","guid":{"rendered":"https:\/\/www.prader-willi.ro\/?p=822"},"modified":"2023-03-09T16:19:45","modified_gmt":"2023-03-09T14:19:45","slug":"ziua-internationala-a-bolilor-rare-28-februarie-2023","status":"publish","type":"post","link":"https:\/\/www.prader-willi.ro\/index.php\/2023\/03\/09\/ziua-internationala-a-bolilor-rare-28-februarie-2023\/","title":{"rendered":"Ziua Interna\u021bional\u0103 a Bolilor Rare 28 februarie 2023"},"content":{"rendered":"\n

\u00cen fiecare an, \u00een ultima zi a lunii februarie, este celebrat\u0103 Ziua Interna\u021bional\u0103 a Bolilor Rare.
EURORDIS \u2013 Alian\u021ba European\u0103 a Asocia\u021biilor de Pacien\u021bi cu Boli Rare a stabilit ultima zi a lunii februarie ca Zi Interna\u021bional\u0103 a Bolilor Rare \u00eencep\u00e2nd cu anul 2008.<\/p>\n\n\n\n

Ziua Interna\u021bional\u0103 a Bolilor Rare ofer\u0103 oportunitatea de a milita \u00eempreun\u0103 cu cele peste 1000 de asocia\u021bii de pacien\u021bi din 74 de state pentru echitate, accesul la servicii de diagnostic \u0219i tratament \u0219i oportunit\u0103\u021bi sociale pentru persoanele care tr\u0103iesc cu o boal\u0103 rar\u0103. Aceast\u0103 zi contribuie la solidarizarea comunit\u0103\u021bii interna\u021bionale de boli rare, multidisciplinar\u0103 \u0219i divers\u0103.<\/p>\n\n\n\n

Se estimeaz\u0103 c\u0103 aproximativ 5% din cet\u0103\u021benii lumii sunt afecta\u021bi de o boal\u0103 rar\u0103. Num\u0103rul de 300 de milioane de persoane care tr\u0103iesc cu o boal\u0103 rar\u0103 aproape echivaleaz\u0103 cu popula\u021bia Statelor Unite ale Americii. Cele peste 6000 de boli rare identificate sunt caracterizate de o mare diversitate de simptome care variaz\u0103 nu numai de la boal\u0103 la boal\u0103, ci \u0219i de la pacient la pacient:<\/p>\n\n\n\n

\u2013 72% dintre bolile rare sunt genetice, iar celelalte sunt rezultatul infec\u021biilor virale sau bacteriene, alergiilor, factorilor din mediul \u00eenconjur\u0103tor sau sunt cancere rare;
\u2013 70% din bolile rare genetice debuteaz\u0103 \u00een copil\u0103rie;
\u2013 aproape 1 din 5 cancere este estimat ca fiind cancer rar; exist\u0103 \u00een jur de 200 de tipuri de cancere rare.<\/p>\n\n\n\n

Comisia European\u0103 are ca obiective cre\u0219terea capacit\u0103\u021bii de cercetare, asigurarea programelor de instruire a profesioni\u0219tilor din sistemul de s\u0103n\u0103tate, dar \u0219i a pacien\u021bilor pentru a veni \u00een sprijinul celor 25 de milioane de cet\u0103\u021beni europeni diagnostica\u021bi cu o boal\u0103 rar\u0103 pentru a le asigura un acces mai rapid la diagnostic precoce, tratament personalizat \u0219i cre\u0219terea calit\u0103\u021bii vie\u021bii acestor pacien\u021bi.<\/p>\n\n\n\n

\u00cen Rom\u00e2nia, bolile rare afecteaz\u0103 aproape un milion de persoane, estimare prezentat\u0103 la conferin\u0163a \u201eBolile rare \u00een strategiile \u015fi programele na\u0163ionale de s\u0103n\u0103tate\u201d, organizat\u0103 de Alian\u0163a Na\u0163ional\u0103 pentru Boli Rare Rom\u00e2nia. Ziua Interna\u021bional\u0103 a Bolilor Rare ofer\u0103 prilejul de a milita pentru un progres real la nivel local, na\u021bional \u0219i interna\u021bional al ac\u021biunilor \u0219i interven\u021biilor menite s\u0103 \u00eembun\u0103t\u0103\u021beasc\u0103 calitatea serviciilor medicale de diagnostic \u0219i tratament al bolilor rare \u0219i s\u0103 asigure egalitatea de \u0219anse \u00een integrarea social\u0103 a pacien\u021bilor diagnostica\u021bi cu o boal\u0103 rar\u0103.<\/p>\n\n\n\n

https:\/\/insp.gov.ro\/2023\/02\/27\/ziua-internationala-a-bolilor-rare-28-februarie-2023\/<\/a><\/p>\n\n\n\n

\"\"<\/figure>\n","protected":false},"excerpt":{"rendered":"

\u00cen fiecare an, \u00een ultima zi a lunii februarie, este celebrat\u0103 Ziua Interna\u021bional\u0103 a Bolilor Rare.EURORDIS \u2013 Alian\u021ba European\u0103 a Asocia\u021biilor de Pacien\u021bi cu Boli Rare a stabilit ultima zi a luniiRead More…<\/a><\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_jetpack_newsletter_access":"","_jetpack_dont_email_post_to_subs":false,"_jetpack_newsletter_tier_id":0,"_jetpack_memberships_contains_paywalled_content":false,"_jetpack_memberships_contains_paid_content":false,"footnotes":""},"categories":[1],"tags":[],"class_list":["post-822","post","type-post","status-publish","format-standard","hentry","category-uncategorized"],"jetpack_featured_media_url":"","jetpack_sharing_enabled":true,"_links":{"self":[{"href":"https:\/\/www.prader-willi.ro\/index.php\/wp-json\/wp\/v2\/posts\/822","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.prader-willi.ro\/index.php\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.prader-willi.ro\/index.php\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.prader-willi.ro\/index.php\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/www.prader-willi.ro\/index.php\/wp-json\/wp\/v2\/comments?post=822"}],"version-history":[{"count":1,"href":"https:\/\/www.prader-willi.ro\/index.php\/wp-json\/wp\/v2\/posts\/822\/revisions"}],"predecessor-version":[{"id":824,"href":"https:\/\/www.prader-willi.ro\/index.php\/wp-json\/wp\/v2\/posts\/822\/revisions\/824"}],"wp:attachment":[{"href":"https:\/\/www.prader-willi.ro\/index.php\/wp-json\/wp\/v2\/media?parent=822"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.prader-willi.ro\/index.php\/wp-json\/wp\/v2\/categories?post=822"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.prader-willi.ro\/index.php\/wp-json\/wp\/v2\/tags?post=822"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}