{"id":7742,"date":"2023-11-09T19:08:44","date_gmt":"2023-11-09T19:08:44","guid":{"rendered":"https:\/\/www.lgmd-info.org\/?post_type=tribe_events&#038;p=7742"},"modified":"2023-11-09T19:08:44","modified_gmt":"2023-11-09T19:08:44","slug":"advancing-the-development-of-therapeutics-through-rare-disease-patient-community-engagement","status":"publish","type":"tribe_events","link":"https:\/\/www.lgmd-info.org\/tr\/event\/advancing-the-development-of-therapeutics-through-rare-disease-patient-community-engagement\/","title":{"rendered":"Advancing the Development of Therapeutics Through Rare Disease Patient Community Engagement"},"content":{"rendered":"<div class=\"\" data-block=\"true\" data-editor=\"crt41\" data-offset-key=\"9eh62-0-0\">\n<div class=\"_1mf _1mj\" data-offset-key=\"9eh62-0-0\"><span data-offset-key=\"9eh62-0-0\">This public <\/span><span data-offset-key=\"9eh62-1-0\">virtual<\/span><span data-offset-key=\"9eh62-2-0\"> meeting will discuss approaches and opportunities for engaging patients, patient groups, rare disease or condition experts, and experts on small population studies during the drug development process for rare diseases. The meeting will focus on how to best understand patients\u2019 experiences living with a rare disease and how to incorporate those experiences and priorities throughout the drug development process. This includes understanding patient perspectives on the burden of their condition and any existing treatment options, as well as how their current health status and risk of disease progression may impact willingness to accept risks from treatment side effects.<\/span><\/div>\n<\/div>\n<div class=\"\" data-block=\"true\" data-editor=\"crt41\" data-offset-key=\"1v9rv-0-0\">\n<div class=\"_1mf _1mj\" data-offset-key=\"1v9rv-0-0\"><span data-offset-key=\"1v9rv-0-0\">\u00a0<\/span><\/div>\n<\/div>\n<div class=\"\" data-block=\"true\" data-editor=\"crt41\" data-offset-key=\"1gqm4-0-0\">\n<div class=\"_1mf _1mj\" data-offset-key=\"1gqm4-0-0\"><span data-offset-key=\"1gqm4-0-0\">\u27a1Learn more and register at <a href=\"https:\/\/healthpolicy.duke.edu\/events\/advancing-development-therapeutics-through-rare-disease-patient-community-engagement\" target=\"_blank\" rel=\"noopener\">https:\/\/healthpolicy.duke.edu\/events\/advancing-development-therapeutics-through-rare-disease-patient-community-engagement<\/a><\/span><\/div>\n<\/div>\n","protected":false},"excerpt":{"rendered":"<p>This public virtual meeting will discuss approaches and opportunities for [&hellip;]<\/p>\n","protected":false},"author":3,"featured_media":0,"comment_status":"open","ping_status":"closed","template":"","meta":{"_acf_changed":false,"_tribe_events_status":"","_tribe_events_status_reason":"","footnotes":""},"tags":[],"tribe_events_cat":[],"class_list":["post-7742","tribe_events","type-tribe_events","status-publish","hentry"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v23.9 - https:\/\/yoast.com\/wordpress\/plugins\/seo\/ -->\n<title>Advancing the Development of Therapeutics Through Rare Disease Patient Community Engagement - LGMD Awareness Foundation<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/www.lgmd-info.org\/tr\/event\/advancing-the-development-of-therapeutics-through-rare-disease-patient-community-engagement\/\" \/>\n<meta property=\"og:locale\" content=\"tr_TR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Advancing the Development of Therapeutics Through Rare Disease Patient Community Engagement - LGMD Awareness Foundation\" \/>\n<meta property=\"og:description\" content=\"This public virtual meeting will discuss approaches and opportunities for [&hellip;]\" \/>\n<meta property=\"og:url\" content=\"https:\/\/www.lgmd-info.org\/tr\/event\/advancing-the-development-of-therapeutics-through-rare-disease-patient-community-engagement\/\" \/>\n<meta property=\"og:site_name\" content=\"LGMD Awareness Foundation\" \/>\n<meta property=\"article:publisher\" content=\"https:\/\/www.facebook.com\/LGMDawareness\/\" \/>\n<meta property=\"og:image\" content=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2021\/06\/LGMD-Logo_1200X630.png\" \/>\n\t<meta property=\"og:image:width\" content=\"1200\" \/>\n\t<meta property=\"og:image:height\" content=\"630\" \/>\n\t<meta property=\"og:image:type\" content=\"image\/png\" \/>\n<meta name=\"twitter:card\" content=\"summary_large_image\" \/>\n<meta name=\"twitter:site\" content=\"@LgmdAwareness\" \/>\n<meta name=\"twitter:label1\" content=\"Est. reading time\" \/>\n\t<meta name=\"twitter:data1\" content=\"1 minute\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\/\/schema.org\",\"@graph\":[{\"@type\":\"WebPage\",\"@id\":\"https:\/\/www.lgmd-info.org\/ar\/event\/advancing-the-development-of-therapeutics-through-rare-disease-patient-community-engagement\/\",\"url\":\"https:\/\/www.lgmd-info.org\/ar\/event\/advancing-the-development-of-therapeutics-through-rare-disease-patient-community-engagement\/\",\"name\":\"Advancing the Development of Therapeutics Through Rare Disease Patient Community Engagement - LGMD Awareness Foundation\",\"isPartOf\":{\"@id\":\"https:\/\/www.lgmd-info.org\/de\/#website\"},\"datePublished\":\"2023-11-09T19:08:44+00:00\",\"dateModified\":\"2023-11-09T19:08:44+00:00\",\"breadcrumb\":{\"@id\":\"https:\/\/www.lgmd-info.org\/ar\/event\/advancing-the-development-of-therapeutics-through-rare-disease-patient-community-engagement\/#breadcrumb\"},\"inLanguage\":\"tr-TR\",\"potentialAction\":[{\"@type\":\"ReadAction\",\"target\":[\"https:\/\/www.lgmd-info.org\/ar\/event\/advancing-the-development-of-therapeutics-through-rare-disease-patient-community-engagement\/\"]}]},{\"@type\":\"BreadcrumbList\",\"@id\":\"https:\/\/www.lgmd-info.org\/ar\/event\/advancing-the-development-of-therapeutics-through-rare-disease-patient-community-engagement\/#breadcrumb\",\"itemListElement\":[{\"@type\":\"ListItem\",\"position\":1,\"name\":\"Home\",\"item\":\"https:\/\/www.lgmd-info.org\/de\/\"},{\"@type\":\"ListItem\",\"position\":2,\"name\":\"Events\",\"item\":\"https:\/\/www.lgmd-info.org\/de\/events\/\"},{\"@type\":\"ListItem\",\"position\":3,\"name\":\"Advancing the Development of Therapeutics Through Rare Disease Patient Community Engagement\"}]},{\"@type\":\"WebSite\",\"@id\":\"https:\/\/www.lgmd-info.org\/de\/#website\",\"url\":\"https:\/\/www.lgmd-info.org\/de\/\",\"name\":\"LGMD Awareness Foundation\",\"description\":\"Information Hub for the LGMD community\",\"publisher\":{\"@id\":\"https:\/\/www.lgmd-info.org\/de\/#organization\"},\"potentialAction\":[{\"@type\":\"SearchAction\",\"target\":{\"@type\":\"EntryPoint\",\"urlTemplate\":\"https:\/\/www.lgmd-info.org\/de\/?s={search_term_string}\"},\"query-input\":{\"@type\":\"PropertyValueSpecification\",\"valueRequired\":true,\"valueName\":\"search_term_string\"}}],\"inLanguage\":\"tr-TR\"},{\"@type\":\"Organization\",\"@id\":\"https:\/\/www.lgmd-info.org\/de\/#organization\",\"name\":\"LGMD Awareness Foundation, Inc.\",\"url\":\"https:\/\/www.lgmd-info.org\/de\/\",\"logo\":{\"@type\":\"ImageObject\",\"inLanguage\":\"tr-TR\",\"@id\":\"https:\/\/www.lgmd-info.org\/de\/#\/schema\/logo\/image\/\",\"url\":\"https:\/\/lgmd-info.org\/wp-content\/uploads\/2021\/02\/LGMD_Logo.png\",\"contentUrl\":\"https:\/\/lgmd-info.org\/wp-content\/uploads\/2021\/02\/LGMD_Logo.png\",\"width\":208,\"height\":61,\"caption\":\"LGMD Awareness Foundation, Inc.\"},\"image\":{\"@id\":\"https:\/\/www.lgmd-info.org\/de\/#\/schema\/logo\/image\/\"},\"sameAs\":[\"https:\/\/www.facebook.com\/LGMDawareness\/\",\"https:\/\/x.com\/LgmdAwareness\",\"https:\/\/www.instagram.com\/lgmdawareness\/\"]}]}<\/script>\n<!-- \/ Yoast SEO plugin. -->","yoast_head_json":{"title":"Advancing the Development of Therapeutics Through Rare Disease Patient Community Engagement - LGMD Awareness Foundation","robots":{"index":"index","follow":"follow","max-snippet":"max-snippet:-1","max-image-preview":"max-image-preview:large","max-video-preview":"max-video-preview:-1"},"canonical":"https:\/\/www.lgmd-info.org\/tr\/event\/advancing-the-development-of-therapeutics-through-rare-disease-patient-community-engagement\/","og_locale":"tr_TR","og_type":"article","og_title":"Advancing the Development of Therapeutics Through Rare Disease Patient Community Engagement - LGMD Awareness Foundation","og_description":"This public virtual meeting will discuss approaches and opportunities for [&hellip;]","og_url":"https:\/\/www.lgmd-info.org\/tr\/event\/advancing-the-development-of-therapeutics-through-rare-disease-patient-community-engagement\/","og_site_name":"LGMD Awareness Foundation","article_publisher":"https:\/\/www.facebook.com\/LGMDawareness\/","og_image":[{"width":1200,"height":630,"url":"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2021\/06\/LGMD-Logo_1200X630.png","type":"image\/png"}],"twitter_card":"summary_large_image","twitter_site":"@LgmdAwareness","twitter_misc":{"Est. reading time":"1 minute"},"schema":{"@context":"https:\/\/schema.org","@graph":[{"@type":"WebPage","@id":"https:\/\/www.lgmd-info.org\/ar\/event\/advancing-the-development-of-therapeutics-through-rare-disease-patient-community-engagement\/","url":"https:\/\/www.lgmd-info.org\/ar\/event\/advancing-the-development-of-therapeutics-through-rare-disease-patient-community-engagement\/","name":"Advancing the Development of Therapeutics Through Rare Disease Patient Community Engagement - LGMD Awareness Foundation","isPartOf":{"@id":"https:\/\/www.lgmd-info.org\/de\/#website"},"datePublished":"2023-11-09T19:08:44+00:00","dateModified":"2023-11-09T19:08:44+00:00","breadcrumb":{"@id":"https:\/\/www.lgmd-info.org\/ar\/event\/advancing-the-development-of-therapeutics-through-rare-disease-patient-community-engagement\/#breadcrumb"},"inLanguage":"tr-TR","potentialAction":[{"@type":"ReadAction","target":["https:\/\/www.lgmd-info.org\/ar\/event\/advancing-the-development-of-therapeutics-through-rare-disease-patient-community-engagement\/"]}]},{"@type":"BreadcrumbList","@id":"https:\/\/www.lgmd-info.org\/ar\/event\/advancing-the-development-of-therapeutics-through-rare-disease-patient-community-engagement\/#breadcrumb","itemListElement":[{"@type":"ListItem","position":1,"name":"Home","item":"https:\/\/www.lgmd-info.org\/de\/"},{"@type":"ListItem","position":2,"name":"Events","item":"https:\/\/www.lgmd-info.org\/de\/events\/"},{"@type":"ListItem","position":3,"name":"Advancing the Development of Therapeutics Through Rare Disease Patient Community Engagement"}]},{"@type":"WebSite","@id":"https:\/\/www.lgmd-info.org\/de\/#website","url":"https:\/\/www.lgmd-info.org\/de\/","name":"LGMD Awareness Foundation","description":"Information Hub for the LGMD community","publisher":{"@id":"https:\/\/www.lgmd-info.org\/de\/#organization"},"potentialAction":[{"@type":"SearchAction","target":{"@type":"EntryPoint","urlTemplate":"https:\/\/www.lgmd-info.org\/de\/?s={search_term_string}"},"query-input":{"@type":"PropertyValueSpecification","valueRequired":true,"valueName":"search_term_string"}}],"inLanguage":"tr-TR"},{"@type":"Organization","@id":"https:\/\/www.lgmd-info.org\/de\/#organization","name":"LGMD Awareness Foundation, Inc.","url":"https:\/\/www.lgmd-info.org\/de\/","logo":{"@type":"ImageObject","inLanguage":"tr-TR","@id":"https:\/\/www.lgmd-info.org\/de\/#\/schema\/logo\/image\/","url":"https:\/\/lgmd-info.org\/wp-content\/uploads\/2021\/02\/LGMD_Logo.png","contentUrl":"https:\/\/lgmd-info.org\/wp-content\/uploads\/2021\/02\/LGMD_Logo.png","width":208,"height":61,"caption":"LGMD Awareness Foundation, Inc."},"image":{"@id":"https:\/\/www.lgmd-info.org\/de\/#\/schema\/logo\/image\/"},"sameAs":["https:\/\/www.facebook.com\/LGMDawareness\/","https:\/\/x.com\/LgmdAwareness","https:\/\/www.instagram.com\/lgmdawareness\/"]}]}},"_links":{"self":[{"href":"https:\/\/www.lgmd-info.org\/tr\/wp-json\/wp\/v2\/tribe_events\/7742","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.lgmd-info.org\/tr\/wp-json\/wp\/v2\/tribe_events"}],"about":[{"href":"https:\/\/www.lgmd-info.org\/tr\/wp-json\/wp\/v2\/types\/tribe_events"}],"author":[{"embeddable":true,"href":"https:\/\/www.lgmd-info.org\/tr\/wp-json\/wp\/v2\/users\/3"}],"replies":[{"embeddable":true,"href":"https:\/\/www.lgmd-info.org\/tr\/wp-json\/wp\/v2\/comments?post=7742"}],"version-history":[{"count":1,"href":"https:\/\/www.lgmd-info.org\/tr\/wp-json\/wp\/v2\/tribe_events\/7742\/revisions"}],"predecessor-version":[{"id":7743,"href":"https:\/\/www.lgmd-info.org\/tr\/wp-json\/wp\/v2\/tribe_events\/7742\/revisions\/7743"}],"wp:attachment":[{"href":"https:\/\/www.lgmd-info.org\/tr\/wp-json\/wp\/v2\/media?parent=7742"}],"wp:term":[{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.lgmd-info.org\/tr\/wp-json\/wp\/v2\/tags?post=7742"},{"taxonomy":"tribe_events_cat","embeddable":true,"href":"https:\/\/www.lgmd-info.org\/tr\/wp-json\/wp\/v2\/tribe_events_cat?post=7742"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}