{"id":718,"date":"2023-10-19T07:44:04","date_gmt":"2024-02-09T09:13:48","guid":{"rendered":"https:\/\/002.chilluh.nl\/nord-rare-disease-day-2024\/"},"modified":"2023-10-19T07:44:04","modified_gmt":"2024-02-09T09:13:48","slug":"nord-rare-disease-day-2024","status":"publish","type":"post","link":"https:\/\/werelivingwell.com\/zhtsg-nord-rare-disease-day-2024-gplar-info\/","title":{"rendered":"Nord Rare Disease Day 2024"},"content":{"rendered":"<div class=\"cd5c096581fd5fc23b44a4969c1e3c2e\" data-index=\"1\" style=\"float: none; margin:10px 0 10px 0; text-align:center;\">\n<div style='text-align: center;'>\r\n<script type=\"text\/javascript\">\r\n\tatOptions = {\r\n\t\t'key' : '0a1f35073c594f712b44ac459670782f',\r\n\t\t'format' : 'iframe',\r\n\t\t'height' : 250,\r\n\t\t'width' : 300,\r\n\t\t'params' : {}\r\n\t};\r\n\tdocument.write('<scr' + 'ipt type=\"text\/javascript\" src=\"\/\/www.profitablecreativeformat.com\/0a1f35073c594f712b44ac459670782f\/invoke.js\"><\/scr' + 'ipt>');\r\n<\/script>\r\n<\/div>\r\n\n<\/div>\n<p>\t\t\t\t<![CDATA[\n\n<p><b>Nord Rare Disease Day 2024<\/b> &#8211; On Rare Disease Day, we spoke to chief executive of the Genetic Alliance UK, Jayne Spink, about using the patient voice to tear down barriers to building evidence for, and securing access to  . We provided a link below. Rare Disease Day is usually on February 28th, but this year is on the 29th since it\u2019s Leap Year, the rarest day on the calendar. By the way, Eli\u2019s birthday is  .<\/p>\n\n\n\n\n<h2>Nord Rare Disease Day 2024<\/h2>\n\n\n\n\n<p align=\"center\"> <a title=\"Rare Disease Day at NIH 2024   National Organization for Rare \"><img decoding=\"async\" src=\"https:\/\/rarediseases.org\/wp-content\/uploads\/2023\/12\/NCATS_RDD_LogosStacked_2024_Blue.jpg\" width=\"100%\" height=\"100%\"><\/a> <\/p>\n\n\nSource : <a href=\"https:\/\/rarediseases.org\">rarediseases.org<\/a>\n\n\n<h2>Preparing for Rare Disease Day 2024   YouTube<\/h2>\n\n\n\n\n<p align=\"center\"><a title=\"Preparing for Rare Disease Day 2024   YouTube\"><img decoding=\"async\" src=\"https:\/\/i.ytimg.com\/vi\/sOhgvE4z28s\/hqdefault.jpg?sqp=-oaymwEmCOADEOgC8quKqQMa8AEB-AH-CYAC0AWKAgwIABABGGUgSShGMA8=&amp;rs=AOn4CLBsv6AHsDzgdGXZNBsJj2zHPZl-7A\" width=\"100%\" height=\"100%\"><\/a> <\/p>\n\n\nSource : <a href=\"https:\/\/www.youtube.com\" rel=\"nofollow\">www.youtube.com<\/a>\n\n\n<h2>Rare Disease Day 2024   Join Us On February 29 | NORD<\/h2>\n\n\n\n\n<p align=\"center\"><a title=\"Rare Disease Day 2024   Join Us On February 29 | NORD\"><img decoding=\"async\" src=\"https:\/\/rarediseases.org\/wp-content\/uploads\/2024\/01\/Capture-3.png\" width=\"100%\" height=\"100%\"><\/a> <\/p>\n\n\nSource : <a href=\"https:\/\/rarediseases.org\" rel=\"nofollow\">rarediseases.org<\/a>\n\n\n<h2>National Organization for Rare Disorders, Inc. (NORD) | Quincy MA<\/h2>\n\n\n\n\n<p align=\"center\"> <a title=\"National Organization for Rare Disorders, Inc. (NORD) | Quincy MA\"><img decoding=\"async\" src=\"https:\/\/lookaside.fbsbx.com\/lookaside\/crawler\/media\/?media_id=776800824474315\" width=\"100%\" height=\"100%\"><\/a> <\/p>\n\n\nSource : <a href=\"https:\/\/www.facebook.com\" rel=\"nofollow\">www.facebook.com<\/a>\n\n\n<h2>Public meeting: FDA Rare Disease Day 2024   National Organization <\/h2>\n\n\n\n\n<p align=\"center\"> <a title=\"Public meeting: FDA Rare Disease Day 2024   National Organization \"><img decoding=\"async\" src=\"https:\/\/rarediseases.org\/wp-content\/uploads\/2023\/12\/RDD-2024_Web-Graphic_FINAL-01.png\" width=\"100%\" height=\"100%\"><\/a> <\/p>\n\n\nSource : <a href=\"https:\/\/rarediseases.org\" rel=\"nofollow\">rarediseases.org<\/a>\n\n\n<h2>NATIONAL ORGANIZATION FOR RARE DISORDERS (NORD)   Rare Disease Day <\/h2>\n\n\n\n\n<p align=\"center\"> <a title=\"NATIONAL ORGANIZATION FOR RARE DISORDERS (NORD)   Rare Disease Day \"><img decoding=\"async\" src=\"https:\/\/www.rarediseaseday.org\/wp-content\/uploads\/usa.jpg\" width=\"100%\" height=\"100%\"><\/a> <\/p>\n\n\nSource : <a href=\"https:\/\/www.rarediseaseday.org\" rel=\"nofollow\">www.rarediseaseday.org<\/a>\n\n\n<h2>Rare Disease Day 2024   Join Us On February 29 | NORD<\/h2>\n\n\n\n\n<p align=\"center\"> <a title=\"Rare Disease Day 2024   Join Us On February 29 | NORD\"><img decoding=\"async\" src=\"https:\/\/rarediseases.org\/wp-content\/uploads\/2024\/01\/man-1-604x1024.jpeg\" width=\"100%\" height=\"100%\"><\/a> <\/p>\n\n\nSource : <a href=\"https:\/\/rarediseases.org\" rel=\"nofollow\">rarediseases.org<\/a>\n\n\n<h2>What are your plans to celebrate #RareDiseaseDay where you live <\/h2>\n\n\n\n\n<p align=\"center\"> <a title=\"What are your plans to celebrate #RareDiseaseDay where you live \"><img decoding=\"async\" src=\"https:\/\/lookaside.instagram.com\/seo\/google_widget\/crawler\/?media_id=3294071511449789739\" width=\"100%\" height=\"100%\"><\/a> <\/p>\n\n\nSource : <a href=\"https:\/\/www.instagram.com\" rel=\"nofollow\">www.instagram.com<\/a>\n\n\n<h2>Rare Disease Day 2024   Join Us On February 29 | NORD<\/h2>\n\n\n\n\n<p align=\"center\"> <a title=\"Rare Disease Day 2024   Join Us On February 29 | NORD\"><img decoding=\"async\" src=\"https:\/\/rarediseases.org\/wp-content\/uploads\/2024\/01\/Penn-Medicine-scaled-1-1024x683.jpg\" width=\"100%\" height=\"100%\"><\/a> <\/p>\n\n\nSource : <a href=\"https:\/\/rarediseases.org\" rel=\"nofollow\">rarediseases.org<\/a>\n\n\n<h2>National Organization for Rare Disorders, Inc. (NORD) | Quincy MA<\/h2>\n\n\n\n\n<p align=\"center\"> <a title=\"National Organization for Rare Disorders, Inc. (NORD) | Quincy MA\"><img decoding=\"async\" src=\"https:\/\/lookaside.fbsbx.com\/lookaside\/crawler\/media\/?media_id=100064332145421\" width=\"100%\" height=\"100%\"><\/a> <\/p>\n\n\nSource : <a href=\"https:\/\/www.facebook.com\" rel=\"nofollow\">www.facebook.com<\/a>\n\n\n<p><b>Nord Rare Disease Day 2024 Rare Disease Day at NIH 2024   National Organization for Rare <\/b>:   BARBOURSVILLE \u2014 At 5 years old, Hannah Long was diagnosed with a rare and incurable blood disorder  she needs to have medicine injected every day, followed by a bone marrow aspiration every  . The FDA approved the first drug for the rare disease Friedreich\u2019s ataxia; House Republicans seek information from pharmacy benefit managers (PBMs); FDA panel narrowly supports respiratory  . <\/p>\n\n\n]]>\t\t<\/p>\n\n<div style=\"font-size: 0px; height: 0px; line-height: 0px; margin: 0; padding: 0; clear: both;\"><\/div>","protected":false},"excerpt":{"rendered":"<p>\t\t\t\t<![CDATA[]]>\t\t<\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[57],"tags":[],"aioseo_notices":[],"_links":{"self":[{"href":"https:\/\/werelivingwell.com\/wp-json\/wp\/v2\/posts\/718"}],"collection":[{"href":"https:\/\/werelivingwell.com\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/werelivingwell.com\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/werelivingwell.com\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/werelivingwell.com\/wp-json\/wp\/v2\/comments?post=718"}],"version-history":[{"count":0,"href":"https:\/\/werelivingwell.com\/wp-json\/wp\/v2\/posts\/718\/revisions"}],"wp:attachment":[{"href":"https:\/\/werelivingwell.com\/wp-json\/wp\/v2\/media?parent=718"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/werelivingwell.com\/wp-json\/wp\/v2\/categories?post=718"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/werelivingwell.com\/wp-json\/wp\/v2\/tags?post=718"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}