{"id":80427,"date":"2025-02-23T17:58:47","date_gmt":"2025-02-23T16:58:47","guid":{"rendered":"https:\/\/www.myspecialdoctor.it\/%e6%9c%aa%e5%88%86%e7%b1%bb\/%e5%81%a5%e5%ba%b7%ef%bc%9a%e7%bd%95%e8%a7%81%e7%97%85%e5%85%8d%e8%b4%b9%e6%b3%95%e5%be%8b%e5%92%a8%e8%af%a2%e5%8f%b0\/"},"modified":"2025-06-21T07:48:20","modified_gmt":"2025-06-21T05:48:20","slug":"%e5%81%a5%e5%ba%b7%ef%bc%9a%e7%bd%95%e8%a7%81%e7%97%85%e5%85%8d%e8%b4%b9%e6%b3%95%e5%be%8b%e5%92%a8%e8%af%a2%e5%8f%b0","status":"publish","type":"post","link":"https:\/\/www.myspecialdoctor.it\/zh-hans\/%e5%81%a5%e5%ba%b7%e4%b8%8e%e7%a4%be%e4%bc%9a\/%e5%81%a5%e5%ba%b7%ef%bc%9a%e7%bd%95%e8%a7%81%e7%97%85%e5%85%8d%e8%b4%b9%e6%b3%95%e5%be%8b%e5%92%a8%e8%af%a2%e5%8f%b0\/","title":{"rendered":"\u5065\u5eb7\uff1a\u7f55\u89c1\u75be\u75c5\u514d\u8d39\u6cd5\u5f8b\u54a8\u8be2\u53f0"},"content":{"rendered":"<p>\u5728 &#8220;<strong>2018 \u5e74<\/strong>\u7f55\u89c1<strong>\u75c5\u65e5<\/strong>&#8220;\uff08Rare Disease<strong>Day 2018<\/strong>\uff09\u4e4b\u9645\uff0c\u7f55\u89c1\u75c5\u89c2\u5bdf\u7ad9\uff08Rare Disease Observatory\uff09\u63a8\u51fa\u4e86\u4e00\u9879\u4e13\u95e8\u9762\u5411\u60a3\u8005\u7684\u65b0\u670d\u52a1\uff1a\u514d\u8d39\u6cd5\u5f8b\u670d\u52a1\u53f0\uff08Legal Desk\uff09\uff0c\u540d\u4e3a &#8220;Dalla parte dei Rari&#8221;\uff08\u7f55\u89c1\u75c5\u4e00\u65b9\uff09\u3002\u8fd9\u4e00\u4e3e\u63aa\u65e8\u5728\u5e2e\u52a9\u4eba\u4eec\u5728\u6cd5\u5f8b\u3001\u8d22\u653f\u548c\u5b98\u50da\u4e3b\u4e49\u7684\u7ea0\u7f20\u4e2d\u627e\u5230\u81ea\u5df1\u7684\u65b9\u5411\uff0c\u56e0\u4e3a\u5728\u8fd9\u4e9b\u9886\u57df\u4e2d\uff0c\u4eba\u4eec\u5f80\u5f80\u5f88\u5bb9\u6613\u8ff7\u5931\u65b9\u5411\u3002\u8be5\u670d\u52a1\u5b8c\u5168\u514d\u8d39\uff0c<strong>\u81ea 2 \u6708 28 \u65e5\u8d77\u5f00\u59cb\u8fd0\u884c<\/strong>\uff1a\u8981\u8bbf\u95ee\u8be5\u7f51\u7ad9\uff0c\u8bf7\u8bbf\u95ee https:\/\/www.osservatoriomalattierare.it\/sportello-legale-omar-dalla-parte-dei-rari\u3002\u6cd5\u5f8b\u54a8\u8be2\u4e13\u680f\u7531<strong>OSSFOR (Osservatorio<\/strong>Farmaci Orfani) \u7684\u5f8b\u5e08\u517c\u7814\u7a76\u5458 Roberta Venturi \u548c Omar \u7684\u4e3b\u7f16 Ilaria Vacca \u7f16\u8f91\u3002<\/p>\n<h4><strong>\u4ec0\u4e48\u662f\u5965\u9a6c\u5c14<\/strong><\/h4>\n<p>\u7f55\u89c1\u75c5\u89c2\u5bdf\u7ad9\u300b\uff08Osservatorio Malattie Rare\uff09\u662f\u4e00\u4efd\u4e13\u95e8\u62a5\u9053\u7f55\u89c1\u75c5\u548c\u7f55\u89c1\u764c\u75c7\u7684\u62a5\u7eb8\uff0c\u6bcf\u5468\u90fd\u4f1a\u6536\u5230\u51e0\u5341\u4efd\u5173\u4e8e\u514d\u8d23\u3001\u627f\u8ba4\u6c11\u4e8b\u884c\u4e3a\u65e0\u6548\u3001\u83b7\u5f97\u836f\u7269\u548c\u6cbb\u7597\u7684\u6c42\u52a9\u8bf7\u6c42\u3002\u62a5\u7eb8\u4e3b\u7f16<strong> \u4f0a\u62c9\u5229\u4e9a-\u74e6\u5361\uff08Ilaria Vacca<\/strong>\uff09\u89e3\u91ca\u8bf4\uff1a&#8221;\u867d\u7136\u6211\u4eec\u7684\u5de5\u4f5c\u7eaf\u7cb9\u662f\u4ea4\u6d41\uff0c\u4f46\u6211\u4eec\u5f88\u8363\u5e78\u80fd\u6210\u4e3a\u7f55\u89c1\u75c5\u60a3\u8005\u53ca\u5176\u5bb6\u4eba\u7684\u771f\u6b63\u53c2\u8003\u70b9\u3002\u4e8b\u5b9e\u4e0a\uff0c\u63d0\u4f9b\u53ca\u65f6\u3001\u679c\u65ad\u7684\u7b54\u6848\u5e76\u975e\u6613\u4e8b\uff1a\u8fd9\u5c31\u662f\u6211\u4eec\u51b3\u5b9a\u5f00\u8bbe<strong>\u6cd5\u5f8b\u54a8\u8be2<\/strong>\u4e13\u680f\u7684\u539f\u56e0\u3002\u6211\u4eec\u575a\u4fe1&#8217;\u670d\u52a1\u65b0\u95fb&#8217;\uff0c\u66f4\u575a\u4fe1\u65b0\u95fb\u4e0e\u6cd5\u5f8b\u4e4b\u95f4\u7684\u534f\u540c\u4f5c\u7528&#8221;\u3002<\/p>\n<p><strong>\u7f57\u4f2f\u5854-\u6587\u56fe\u91cc\uff08Roberta Venturi<\/strong>\uff09\u89e3\u91ca\u8bf4\uff1a&#8221;\u9762\u5bf9\u590d\u6742\u7684\u6cd5\u89c4\u3001\u7acb\u6cd5\u6f0f\u6d1e\u6216\u8fc7\u5ea6\u7684\u5b98\u50da\u4e3b\u4e49\uff0c&#8221;\u5979\u662f\u4e00\u540d\u4e13\u95e8\u4ece\u4e8b\u533b\u7597\u4fdd\u5065\u548c\u836f\u54c1\u7ba1\u7406\u4ee5\u53ca\u533b\u7597\u4fdd\u5065\u548c\u79d1\u5b66\u7528\u9014\u4e2d\u7684\u4e2a\u4eba\u6570\u636e\u4fdd\u62a4\u7684\u5f8b\u5e08\uff0c\u540c\u65f6\u4e5f\u662f\u5b64\u513f\u836f\u89c2\u5bdf\u7ad9\u7684\u7814\u7a76\u5458\uff0c&#8221;\u8fd9\u53ef\u80fd\u4f1a\u7ed9\u60a3\u8005\u548c\u5bb6\u5c5e\u5e26\u6765\u4e25\u91cd\u7684\u56f0\u96be\u3002\u56e0\u6b64\uff0c\u6211\u4eec\u7684\u76ee\u6807\u662f<strong> \u6b63\u786e\u544a\u77e5\u5e76\u6307\u5bfc\u7528\u6237<\/strong>\u91c7\u53d6\u6b63\u786e\u7684\u6cd5\u5f8b\u9014\u5f84&#8221;\u3002<\/p>\n<h4><strong>\u65b0\u670d\u52a1<\/strong><\/h4>\n<p>&#8220;O.Ma.R.\u4e00\u76f4\u7ad9\u5728\u60a3\u8005\u7684\u7acb\u573a\u4e0a\uff0c&#8221;\u89c2\u5bdf\u7ad9\u7ad9\u957fIlaria Ciancaleoni\u603b\u7ed3\u9053\uff0c&#8221;\u6709\u4e86\u8fd9\u9879\u670d\u52a1\uff0c\u6211\u4eec\u53ef\u4ee5\u4e3a\u8bb8\u591a\u9677\u5165\u56f0\u5883\u7684\u4eba\u63d0\u4f9b\u66f4\u591a\u5b9e\u9645\u5e2e\u52a9\u3002\u6211\u4eec\u8fd8\u5e0c\u671b\u52a0\u5f3a\u4e0e<strong>\u536b\u751f\u90e8<\/strong>\u3001Aifa\u3001INPS \u4ee5\u53ca\u5404\u5927\u533a\u548c\u5730\u65b9\u536b\u751f\u5f53\u5c40\u7684\u6c9f\u901a\u6e20\u9053\uff0c\u5b83\u4eec\u662f\u4fdd\u62a4\u7f55\u89c1\u75c5\u60a3\u8005\u7684\u5173\u952e\u529b\u91cf\u3002<\/p>\n<p><strong>\u6cd5\u5f8b\u670d\u52a1\u53f0<\/strong>\u7684\u670d\u52a1\u5b8c\u5168\u514d\u8d39\uff0c\u5b83\u5c06\u4f7f\u7528\u4e13\u95e8\u7684\u8054\u7cfb\u8868\u683c\u6536\u96c6\u6240\u6709\u9001\u8fbe\u8be5<strong>\u670d\u52a1\u53f0<\/strong>\u7684\u8bf7\u6c42\uff0c\u8fd8\u5c06\u4e3a\u6240\u6709\u7528\u6237\u63d0\u4f9b\u521d\u6b65\u7684\u6cd5\u5f8b\u6307\u5bfc\u3002\u4e00\u4e9b\u6848\u4ef6\u5c06\u5728\u4e13\u680f\u4e2d\u5f97\u5230\u5bc6\u5207\u5173\u6ce8\u548c\u62a5\u9053\u3002\u8be5\u670d\u52a1\u7684\u4e3b\u9875\u5df2\u7ecf\u63d0\u4f9b\u4e86\u5927\u91cf\u5e38\u89c1\u95ee\u9898\u7684\u7b54\u6848\uff0c\u6d89\u53ca\u514d\u7a0e\u3001\u6c11\u4e8b\u65e0\u6548\u7684\u8ba4\u5b9a\u3001\u7b2c 104 \u53f7\u6cd5\u5f8b\u548c\u7a0e\u6536\u4f18\u60e0\u7b49\u4e3b\u9898\u3002\u611f\u8c22\u5965\u9a6c\u5c14\uff01<\/p>\n","protected":false},"excerpt":{"rendered":"<p>\u5728 &#8220;2018 \u5e74\u7f55\u89c1\u75c5\u65e5&#038; &#8230; <a title=\"\u5065\u5eb7\uff1a\u7f55\u89c1\u75be\u75c5\u514d\u8d39\u6cd5\u5f8b\u54a8\u8be2\u53f0\" class=\"read-more\" href=\"https:\/\/www.myspecialdoctor.it\/zh-hans\/%e5%81%a5%e5%ba%b7%e4%b8%8e%e7%a4%be%e4%bc%9a\/%e5%81%a5%e5%ba%b7%ef%bc%9a%e7%bd%95%e8%a7%81%e7%97%85%e5%85%8d%e8%b4%b9%e6%b3%95%e5%be%8b%e5%92%a8%e8%af%a2%e5%8f%b0\/\" aria-label=\"\u9605\u8bfb \u5065\u5eb7\uff1a\u7f55\u89c1\u75be\u75c5\u514d\u8d39\u6cd5\u5f8b\u54a8\u8be2\u53f0\">\u9605\u8bfb\u66f4\u591a<\/a><\/p>\n","protected":false},"author":8776,"featured_media":80428,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_seopress_robots_primary_cat":"","_seopress_titles_title":"","_seopress_titles_desc":"","_seopress_robots_index":"","_coblocks_attr":"","_coblocks_dimensions":"","_coblocks_responsive_height":"","_coblocks_accordion_ie_support":"","pmpro_default_level":0,"footnotes":"","_wpscppro_custom_social_share_image":0,"_facebook_share_type":"","_twitter_share_type":"","_linkedin_share_type":"","_pinterest_share_type":"","_linkedin_share_type_page":"","_instagram_share_type":"","_medium_share_type":"","_threads_share_type":"","_selected_social_profile":[]},"categories":[3233],"tags":[3831,3339],"corpo":[],"table_tags":[],"class_list":["post-80427","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-3233","tag-3831","tag-3339","pmpro-has-access"],"acf":[],"_links":{"self":[{"href":"https:\/\/www.myspecialdoctor.it\/zh-hans\/wp-json\/wp\/v2\/posts\/80427"}],"collection":[{"href":"https:\/\/www.myspecialdoctor.it\/zh-hans\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.myspecialdoctor.it\/zh-hans\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.myspecialdoctor.it\/zh-hans\/wp-json\/wp\/v2\/users\/8776"}],"replies":[{"embeddable":true,"href":"https:\/\/www.myspecialdoctor.it\/zh-hans\/wp-json\/wp\/v2\/comments?post=80427"}],"version-history":[{"count":1,"href":"https:\/\/www.myspecialdoctor.it\/zh-hans\/wp-json\/wp\/v2\/posts\/80427\/revisions"}],"predecessor-version":[{"id":137612,"href":"https:\/\/www.myspecialdoctor.it\/zh-hans\/wp-json\/wp\/v2\/posts\/80427\/revisions\/137612"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.myspecialdoctor.it\/zh-hans\/wp-json\/wp\/v2\/media\/80428"}],"wp:attachment":[{"href":"https:\/\/www.myspecialdoctor.it\/zh-hans\/wp-json\/wp\/v2\/media?parent=80427"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.myspecialdoctor.it\/zh-hans\/wp-json\/wp\/v2\/categories?post=80427"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.myspecialdoctor.it\/zh-hans\/wp-json\/wp\/v2\/tags?post=80427"},{"taxonomy":"corpo","embeddable":true,"href":"https:\/\/www.myspecialdoctor.it\/zh-hans\/wp-json\/wp\/v2\/corpo?post=80427"},{"taxonomy":"table_tags","embeddable":true,"href":"https:\/\/www.myspecialdoctor.it\/zh-hans\/wp-json\/wp\/v2\/table_tags?post=80427"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}