{"id":59224,"date":"2020-12-16T13:31:08","date_gmt":"2020-12-16T18:31:08","guid":{"rendered":"https:\/\/rarediseases.org\/in-final-installment-of-video-series-patient-advocacy-group-leaders-share-thoughts-on-the-importance-of-participation-in-rdca-dap\/"},"modified":"2020-12-16T13:31:08","modified_gmt":"2020-12-16T18:31:08","slug":"in-final-installment-of-video-series-patient-advocacy-group-leaders-share-thoughts-on-the-importance-of-participation-in-rdca-dap","status":"publish","type":"post","link":"https:\/\/rarediseases.org\/es\/in-final-installment-of-video-series-patient-advocacy-group-leaders-share-thoughts-on-the-importance-of-participation-in-rdca-dap\/","title":{"rendered":"In Final Installment of Video Series, Patient Advocacy Group Leaders Share Thoughts on the Importance of Participation in RDCA-DAP"},"content":{"rendered":"<p><span data-contrast=\"none\">The Rare Disease Cures Accelerator-Data and Analytics Platform (RDCA-DAP) initiative will allow <\/span><span data-contrast=\"none\">patient organizations<\/span><span data-contrast=\"none\">\u00a0to leverage the data th<\/span><span data-contrast=\"none\">ey<\/span><span data-contrast=\"none\">\u00a0have collected to accelerate understanding of disease progression, clinical outcome measures and biomarkers for\u00a0<\/span><span data-contrast=\"none\">rare diseases. It will<\/span><span data-contrast=\"none\">\u00a0increase the<\/span><span data-contrast=\"none\">\u00a0efficiency of data\u00a0<\/span><span data-contrast=\"none\">analy<\/span><span data-contrast=\"none\">sis<\/span><span data-contrast=\"none\">, and hopefully expedite\u00a0<\/span><span data-contrast=\"none\">treatment<\/span><span data-contrast=\"none\">s<\/span><span data-contrast=\"none\">\u00a0for\u00a0<\/span><span data-contrast=\"none\">rare diseases individually and for\u00a0<\/span><span data-contrast=\"none\">symptoms that are common across multiple rare disorders.<\/span><span data-contrast=\"none\"> In t<\/span><span data-contrast=\"none\">he third and final installment <\/span><span data-contrast=\"none\">in<\/span><span data-contrast=\"none\">\u00a0<\/span><span data-contrast=\"none\">NORD and C-Path\u2019s<\/span><span data-contrast=\"none\">\u00a0video<\/span><span data-contrast=\"none\"> series on the importance of patient-reported data to progress in rare disease, leaders from the VHL Alliance, Congenital Hyperinsulinism International and the Foundation for Prader-Willi Research reflect on the question<\/span><span data-contrast=\"none\">,\u00a0<\/span><i><span data-contrast=\"none\">Why<\/span><\/i><i><span data-contrast=\"none\">\u00a0<\/span><\/i><i><span data-contrast=\"none\">I<\/span><\/i><i><span data-contrast=\"none\">s\u00a0<\/span><\/i><i><span data-contrast=\"none\">I<\/span><\/i><i><span data-contrast=\"none\">t Important to Your Organization to\u00a0<\/span><\/i><i><span data-contrast=\"none\">B<\/span><\/i><i><span data-contrast=\"none\">e Involved with RDCA-DAP<\/span><\/i><i><span data-contrast=\"none\">?<\/span><\/i> <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><span data-contrast=\"auto\">\u00a0https:\/\/rarediseases.org\/rdca-dap\/<\/span><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:\/\/www.youtube.com\/embed\/iC46l_gLCjU\" width=\"560\" height=\"315\" frameborder=\"0\" allowfullscreen=\"allowfullscreen\"><\/iframe><\/p>\n","protected":false},"excerpt":{"rendered":"<p>The Rare Disease Cures Accelerator-Data and Analytics Platform (RDCA-DAP) initiative will allow patient organizations\u00a0to leverage the data they\u00a0have collected to accelerate understanding of disease progression, clinical outcome measures and biomarkers &hellip; <\/p>\n<p class=\"link-more\"><a href=\"https:\/\/rarediseases.org\/es\/in-final-installment-of-video-series-patient-advocacy-group-leaders-share-thoughts-on-the-importance-of-participation-in-rdca-dap\/\" class=\"more-link\">Continue reading<span class=\"screen-reader-text\"> \u00abIn Final Installment of Video Series, Patient Advocacy Group Leaders Share Thoughts on the Importance of Participation in RDCA-DAP\u00bb<\/span><\/a><\/p>\n","protected":false},"author":47,"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":[2037,1776,2366,1767,1278,225,1689,2034,407,2036,385],"class_list":["post-59224","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-willi-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\/59224","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\/47"}],"replies":[{"embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/comments?post=59224"}],"version-history":[{"count":0,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/59224\/revisions"}],"wp:attachment":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/media?parent=59224"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/categories?post=59224"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/tags?post=59224"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}