{"id":59220,"date":"2020-12-03T15:46:31","date_gmt":"2020-12-03T20:46:31","guid":{"rendered":"https:\/\/rarediseases.org\/new-video-series-featuring-patient-advocacy-group-leaders-the-importance-of-patient-reported-data-to-progress-in-rare-disease-launched-by-nord-c-path\/"},"modified":"2020-12-03T15:46:31","modified_gmt":"2020-12-03T20:46:31","slug":"new-video-series-featuring-patient-advocacy-group-leaders-the-importance-of-patient-reported-data-to-progress-in-rare-disease-launched-by-nord-c-path","status":"publish","type":"post","link":"https:\/\/rarediseases.org\/es\/new-video-series-featuring-patient-advocacy-group-leaders-the-importance-of-patient-reported-data-to-progress-in-rare-disease-launched-by-nord-c-path\/","title":{"rendered":"New Video Series Featuring Patient Advocacy Group Leaders, &#8220;The Importance of Patient-Reported Data to Progress in Rare Disease,&#8221; Launched by NORD, C-Path"},"content":{"rendered":"<p><span data-contrast=\"none\">As the primary benefactors of drugs that treat rare diseases, patients and caregivers must play a role in the drug development process.<\/span><span data-contrast=\"none\">\u00a0<\/span><span data-contrast=\"none\">Patients and caregivers bring a human\u00a0<\/span><span data-contrast=\"none\">perspective<\/span><span data-contrast=\"none\">\u00a0to the drug development\u00a0<\/span><span data-contrast=\"none\">process and<\/span><span data-contrast=\"none\">\u00a0<\/span><span data-contrast=\"none\">can<\/span><span data-contrast=\"none\">\u00a0guide<\/span><span data-contrast=\"none\">\u00a0researchers toward<\/span><span data-contrast=\"none\">\u00a0<\/span><span data-contrast=\"none\">beneficial<\/span><span data-contrast=\"none\">\u00a0treatment outcomes<\/span><span data-contrast=\"none\">. Hear from\u00a0<\/span><span data-contrast=\"none\">Davelyn Hood (Board President, Congenital Hyperinsulinism International and PI, CHI HI Global Registry)<\/span><span data-contrast=\"none\">,\u00a0<\/span><span data-contrast=\"none\">Joshua Mann (Director of Engagement, VHL Alliance)<\/span><span data-contrast=\"none\">, and\u00a0<\/span><span data-contrast=\"none\">Jessica\u00a0<\/span><span data-contrast=\"none\">Bohonowych<\/span><span data-contrast=\"none\"> (Associate Director of Research Programs, Foundation for Prader-Wili Research)<\/span><span data-contrast=\"none\">\u00a0on<\/span><span data-contrast=\"none\">\u00a0why<\/span><span data-contrast=\"none\">\u00a0patient involvement in drug development is\u00a0<\/span><span data-contrast=\"none\">critical<\/span><span data-contrast=\"none\">\u00a0to progress in rare disease<\/span><span data-contrast=\"none\">\u00a0in\u00a0<\/span><i><span data-contrast=\"none\">How Can Patients and Advocates Help Accelerate Drug\u00a0<\/span><\/i><i><span data-contrast=\"none\">Development?<\/span><\/i> It is <span data-contrast=\"none\">the first installment\u00a0<\/span><span data-contrast=\"none\">in<\/span><span data-contrast=\"none\"> NORD and C-Path&#8217;s new Rare Disease Cures Accelerator-Data and Analytics Platform (RDCA-DAP) video<\/span><span data-contrast=\"none\">\u00a0series<\/span><span data-contrast=\"none\">\u00a0featuring\u00a0<\/span><span data-contrast=\"none\">the three patient advocacy group leaders.<\/span><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:259}\">\u00a0<\/span><\/p>\n<p><span data-contrast=\"none\">To learn more about the RDCA-DAP initiative, visit our website: <\/span><a href=\"https:\/\/rarediseases.org\/rdca-dap\/\"><span data-contrast=\"none\">https:\/\/rarediseases.org\/rdca-dap\/<\/span><\/a><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:259}\">\u00a0<\/span><\/p>\n<p><iframe loading=\"lazy\" src=\"https:\/\/player.vimeo.com\/video\/470662696\" width=\"640\" height=\"360\" frameborder=\"0\" allowfullscreen=\"allowfullscreen\"><\/iframe><\/p>\n","protected":false},"excerpt":{"rendered":"<p>As the primary benefactors of drugs that treat rare diseases, patients and caregivers must play a role in the drug development process.\u00a0Patients and caregivers bring a human\u00a0perspective\u00a0to the drug development\u00a0process &hellip; <\/p>\n<p class=\"link-more\"><a href=\"https:\/\/rarediseases.org\/es\/new-video-series-featuring-patient-advocacy-group-leaders-the-importance-of-patient-reported-data-to-progress-in-rare-disease-launched-by-nord-c-path\/\" class=\"more-link\">Continue reading<span class=\"screen-reader-text\"> &#8220;New Video Series Featuring Patient Advocacy Group Leaders, &#8220;The Importance of Patient-Reported Data to Progress in Rare Disease,&#8221; Launched by NORD, C-Path&#8221;<\/span><\/a><\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_relevanssi_hide_post":"","_relevanssi_hide_content":"","_relevanssi_pin_for_all":"","_relevanssi_pin_keywords":"","_relevanssi_unpin_keywords":"","_relevanssi_related_keywords":"","_relevanssi_related_include_ids":"","_relevanssi_related_exclude_ids":"","_relevanssi_related_no_append":"","_relevanssi_related_not_related":"","_relevanssi_related_posts":"","_relevanssi_noindex_reason":"","_price":"","_stock":"","_tribe_ticket_header":"","_tribe_default_ticket_provider":"","_tribe_ticket_capacity":"","_ticket_start_date":"","_ticket_end_date":"","_tribe_ticket_show_description":"","_tribe_ticket_show_not_going":false,"_tribe_ticket_use_global_stock":"","_tribe_ticket_global_stock_level":"","_global_stock_mode":"","_global_stock_cap":"","_tribe_rsvp_for_event":"","_tribe_ticket_going_count":"","_tribe_ticket_not_going_count":"","_tribe_tickets_list":"[]","_tribe_ticket_has_attendee_info_fields":false,"footnotes":""},"categories":[232,190,192,2427,193],"tags":[2037,1776,2366,2589,1278,225,1689,2034,407,2036,385],"class_list":["post-59220","post","type-post","status-publish","format-standard","hentry","category-advocacy","category-featured-news","category-patients-members","category-rdca-dap","category-research","tag-c-path","tag-congenital-hyperinsulinism-international","tag-critical-path-institute","tag-foundation-for-prader-wili-research","tag-national-organization-for-rare-disorders","tag-nord","tag-patient-advocacy","tag-rare-disease-cures-accelerator-data-and-analytics-platform","tag-rare-disease-treatments","tag-rdca-dap","tag-vhl-alliance"],"acf":[],"_links":{"self":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/59220","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/comments?post=59220"}],"version-history":[{"count":0,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/59220\/revisions"}],"wp:attachment":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/media?parent=59220"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/categories?post=59220"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/tags?post=59220"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}