{"id":7206,"date":"2023-12-21T11:14:46","date_gmt":"2023-12-21T09:14:46","guid":{"rendered":"https:\/\/poryatunok.info\/?p=7206"},"modified":"2024-10-14T16:56:50","modified_gmt":"2024-10-14T13:56:50","slug":"a-joint-coordinative-meeting-eurordis-rare-diseases-europe-ukrainian-rare-diseases","status":"publish","type":"post","link":"https:\/\/poryatunok.info\/en\/news-and-events\/news\/a-joint-coordinative-meeting-eurordis-rare-diseases-europe-ukrainian-rare-diseases\/","title":{"rendered":"A Joint Coordinative Meeting between EURORDIS and Ukrainian Rare Diseases Organizations"},"content":{"rendered":"
On December the 20th, a joint coordinative meeting between the representative of Eurordis-Rare Diseases Europe – Anna Boyko and representatives of patient organizations for rare diseases of Ukraine took place. During the meeting the following was discussed: the activities of the patient orphan community in the conditions of\u00a0 war in Ukraine: successes and challenges. Work of the Ministry of Health of Ukraine in the direction of the implementation of Orphanet in Ukraine. Approval of the network of orphan centers in Ukraine and their involvement in the ERN network. Activities of Rare Disease Hub Ukraine on the basis of NDSL \u201cOkhmatdyt\u201d. Activities for Rare Disease Day – 2024. Plans and needs of patient organizations for 2024. We sincerely thank Eurordis for supporting Ukraine. We hope that Eurordis cooperation and support for Ukraine will be prolonged in 2024 to strengthen the capacity to improve the situation of orphan patients in Ukraine. Thank you to everyone present and open for the dialogue.<\/div>\n
<\/div>\n

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On December the 20th, a joint coordinative meeting between the representative of Eurordis-Rare Diseases Europe – Anna Boyko and representatives of patient organizations for rare diseases of Ukraine took place. During the meeting the following was discussed: the activities of the patient orphan community in the conditions of\u00a0 war in Ukraine: successes and challenges. Work […]<\/p>\n","protected":false},"author":2,"featured_media":7104,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[20],"tags":[],"class_list":["post-7206","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-news"],"yoast_head":"\nA Joint Coordinative Meeting between EURORDIS and Ukrainian Rare Diseases Organizations - Sister Dalila<\/title>\n<meta name=\"description\" content=\"On December the 20th, a joint coordination meeting between the representative of Eurordis-Rare Diseases Europe - Anna Boyko and representatives of patient organizations for rare diseases of Ukraine took place\" \/>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/poryatunok.info\/en\/news-and-events\/news\/a-joint-coordinative-meeting-eurordis-rare-diseases-europe-ukrainian-rare-diseases\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"A Joint Coordinative Meeting between EURORDIS and Ukrainian Rare Diseases Organizations - 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