{"id":3304,"date":"2022-02-16T10:54:03","date_gmt":"2022-02-16T09:54:03","guid":{"rendered":"https:\/\/semmelweis.hu\/genomikai-medicina\/?p=3304"},"modified":"2022-02-16T10:56:14","modified_gmt":"2022-02-16T09:56:14","slug":"varja-ont-is-a-15-ritka-betegsegek-vilagnapja","status":"publish","type":"post","link":"https:\/\/semmelweis.hu\/genomikai-medicina\/2022\/02\/16\/varja-ont-is-a-15-ritka-betegsegek-vilagnapja\/","title":{"rendered":"V\u00e1rja \u00d6nt is a 15. Ritka Betegs\u00e9gek Vil\u00e1gnapja!"},"content":{"rendered":"<h3 style=\"text-align: center\"><strong>Sok szeretettel h\u00edvunk minden \u00e9rdekl\u0151d\u0151t a 2022-ben megrendezend\u0151\u00a015. Ritka Beteg\/s\u00e9g\/ek Vil\u00e1gnapja rendezv\u00e9nyeire!<\/strong><\/h3>\n<p>&nbsp;<\/p>\n<div>\n<p style=\"text-align: justify\">Ez\u00fattal a RIROSZ \u00e9s P\u00e9csi Tudom\u00e1nyegyetem k\u00f6z\u00f6s rendez\u00e9s\u00e9ben, a P\u00e9csi Zsolnay Kultur\u00e1lis Negyedben val\u00f3sul meg a program\u00a0<i>hibrid<\/i>\u00a0m\u00f3don, azaz az online t\u00e9rben is k\u00f6vethet\u0151 lesz.\u00a0<\/p>\n<p style=\"text-align: justify\">A COVID helyzet miatt, az am\u00fagy is h\u00e1tr\u00e1nyos helyzet\u0171 ritka betegs\u00e9ggel \u00e9l\u0151k t\u00e1rsadalma, sajnos m\u00e9g h\u00e1tr\u00e1nyosabb helyzetbe ker\u00fclt, mert \u00e9rthet\u0151 okokb\u00f3l a j\u00e1rv\u00e1ny ker\u00fclt el\u0151t\u00e9rbe. Az eg\u00e9sz popul\u00e1ci\u00f3 szembes\u00fclt azzal a szitu\u00e1ci\u00f3val, ami a ritk\u00e1kn\u00e1l sajnos term\u00e9szetes. Nincs el\u00e9g ell\u00e1t\u00f3hely, nincs el\u00e9g tud\u00e1s, nincs el\u00e9gs\u00e9ges kutat\u00e1s, kev\u00e9s a szakember\u2026 Szerencs\u00e9re ez lassank\u00e9nt megold\u00f3dni l\u00e1tszik, de a ritk\u00e1k helyzet\u00e9nek jav\u00edt\u00e1s\u00e1hoz tov\u00e1bbra is \u00f6sszt\u00e1rsadalmi szolidarit\u00e1sra van\/lesz sz\u00fcks\u00e9g.\u00a0<\/p>\n<h4 style=\"text-align: center\"><strong><i>Id\u00e9n a f\u0151 t\u00e9m\u00e1ink: Es\u00e9lyegyenl\u0151s\u00e9g, m\u00e9lt\u00e1nyoss\u00e1g\u00a0<\/i><\/strong><\/h4>\n<div>\n<p><u>A rendezv\u00e9ny id\u0151pontja: 2022.02.26., 10:00-17:00 \u00f3ra\u00a0<\/u><\/p>\n<p><u>Helye: P\u00e9cs Zsolnay negyed E78-as \u00e9p\u00fclet\u00a0<\/u><u>\u00a0<\/u><\/p>\n<p><u>Tervezett programjaink (hivatalos megh\u00edv\u00f3t <a href=\"https:\/\/semmelweis.hu\/genomikai-medicina\/files\/2022\/02\/Meghivo-RBV2022.pdf\">ide kattintva<\/a> olvashatja):<\/u><\/p>\n<\/div>\n<div>\n<div>\n<ul>\n<li>Szakmai konferencia (szem\u00e9lyesen \u00e9s on-line is)<\/li>\n<li>Betegszervezeti bemutatkoz\u00e1s\u00a0<\/li>\n<li>Betegszervezete standjai\u00a0(on-line is)<\/li>\n<li>Ritka \u00e9s fogyat\u00e9kos emberek m\u0171v\u00e9szeti ki\u00e1ll\u00edt\u00e1sa\u00a0(on-line is)<\/li>\n<li>Fot\u00f3 ki\u00e1ll\u00edt\u00e1s\u00a0(on-line is)\u00a0\u00e9s d\u00edjkioszt\u00f3\u00a0<\/li>\n<li>Sz\u00f3rakoztat\u00f3 \u00e9s k\u00e9zm\u0171ves programok, j\u00e1tsz\u00f3h\u00e1z\u00a0<\/li>\n<li>Sajt\u00f3t\u00e1j\u00e9koztat\u00f3<\/li>\n<\/ul>\n<p><b>K\u00e9rj\u00fck r\u00e9szv\u00e9teli sz\u00e1nd\u00e9k\u00e1t az<a href=\"https:\/\/www.google.com\/url?q=https%3A%2F%2Fforms.office.com%2FPages%2FResponsePage.aspx%3Fid%3DQGEczwowH0edK1crfID2Js8vDi6ho8NGo0SCepVUI-9URVo2S1BBN1FGTVpBQldWN0VHMktYSVJGUyQlQCN0PWcu&amp;sa=D&amp;sntz=1&amp;usg=AFQjCNG3DlS7bDd_IL-e1sIFfdhHdt8sNg\" target=\"_blank\" rel=\"noopener\">\u00a0<\/a><u><a href=\"https:\/\/forms.office.com\/r\/Lesv3Nu9Uf\" target=\"_blank\" rel=\"noopener\">on-line k\u00e9rd\u0151\u00edv<\/a>\u00a0<\/u>kit\u00f6lt\u00e9s\u00e9vel jelezze!\u00a0<\/b><\/p>\n<p>A szakmai konferencia csatlakoz\u00e1s linkj\u00e9t, a regisztr\u00e1lt jelentkez\u0151k sz\u00e1m\u00e1ra az esem\u00e9ny el\u0151tt k\u00fcldj\u00fck ki.\u00a0<\/p>\n<p>A programr\u00f3l t\u00e1j\u00e9koz\u00f3dhat a k\u00f6vetkez\u0151 folyamatosan friss\u00fcl\u0151 linken: <b><br \/>\n<\/b><\/p>\n<p><b><a href=\"https:\/\/ritkanap.rirosz.hu\/ritka-nap-2022\/program-2022\" target=\"_blank\" rel=\"noopener\">Ritka Betegs\u00e9gek Vil\u00e1gnapja &#8211; Program 2022 (rirosz.hu)<\/a>\u00a0<\/b><\/p>\n<p>A\u00a0ritka\u00a0betegs\u00e9gekr\u0151l r\u00e9szletesebben a k\u00f6zponti honlapunkon t\u00e1j\u00e9koz\u00f3dhat:\u00a0<\/p>\n<\/div>\n<div>\n<p align=\"center\"><u><a href=\"https:\/\/www.google.com\/url?q=https%3A%2F%2Fwww.rirosz.hu&amp;sa=D&amp;sntz=1&amp;usg=AFQjCNGCh1i2NexLtbJPBcdBQhL-jTF_lw\" target=\"_blank\" rel=\"noopener\">https:\/\/www.rirosz.hu<\/a><\/u>\u00a0<\/p>\n<p>V\u00e1rjuk \u00d6nt, az \u00e9rintetteket \u00e9s koll\u00e9g\u00e1it is szeretettel!\u00a0<\/p><\/div>\n<div>\u00a0<\/div>\n<div>\u00a0<\/div>\n<\/div>\n<\/div>\n","protected":false},"excerpt":{"rendered":"<p>Sok szeretettel h\u00edvunk minden \u00e9rdekl\u0151d\u0151t a 2022-ben megrendezend\u0151\u00a015. Ritka Beteg\/s\u00e9g\/ek Vil\u00e1gnapja rendezv\u00e9nyeire! &nbsp; Ez\u00fattal a RIROSZ \u00e9s P\u00e9csi Tudom\u00e1nyegyetem k\u00f6z\u00f6s rendez\u00e9s\u00e9ben, a P\u00e9csi Zsolnay Kultur\u00e1lis Negyedben val\u00f3sul meg a program\u00a0hibrid\u00a0m\u00f3don, azaz az online t\u00e9rben is k\u00f6vethet\u0151 lesz.\u00a0 A COVID helyzet miatt, az am\u00fagy is h\u00e1tr\u00e1nyos helyzet\u0171 ritka betegs\u00e9ggel \u00e9l\u0151k t\u00e1rsadalma, sajnos m\u00e9g h\u00e1tr\u00e1nyosabb helyzetbe ker\u00fclt, &hellip;<\/p>\n","protected":false},"author":101429,"featured_media":0,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[15],"tags":[],"class_list":["post-3304","post","type-post","status-publish","format-standard","hentry","category-hirek"],"acf":[],"_links":{"self":[{"href":"https:\/\/semmelweis.hu\/genomikai-medicina\/wp-json\/wp\/v2\/posts\/3304","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/semmelweis.hu\/genomikai-medicina\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/semmelweis.hu\/genomikai-medicina\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/semmelweis.hu\/genomikai-medicina\/wp-json\/wp\/v2\/users\/101429"}],"replies":[{"embeddable":true,"href":"https:\/\/semmelweis.hu\/genomikai-medicina\/wp-json\/wp\/v2\/comments?post=3304"}],"version-history":[{"count":3,"href":"https:\/\/semmelweis.hu\/genomikai-medicina\/wp-json\/wp\/v2\/posts\/3304\/revisions"}],"predecessor-version":[{"id":3307,"href":"https:\/\/semmelweis.hu\/genomikai-medicina\/wp-json\/wp\/v2\/posts\/3304\/revisions\/3307"}],"wp:attachment":[{"href":"https:\/\/semmelweis.hu\/genomikai-medicina\/wp-json\/wp\/v2\/media?parent=3304"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/semmelweis.hu\/genomikai-medicina\/wp-json\/wp\/v2\/categories?post=3304"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/semmelweis.hu\/genomikai-medicina\/wp-json\/wp\/v2\/tags?post=3304"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}