{"id":59421,"date":"2022-06-22T08:00:00","date_gmt":"2022-06-22T12:00:00","guid":{"rendered":"https:\/\/rarediseases.org\/season-finale-the-fdas-dr-kathleen-donohue-and-rdca-dap\/"},"modified":"2022-06-22T08:00:00","modified_gmt":"2022-06-22T12:00:00","slug":"season-finale-the-fdas-dr-kathleen-donohue-and-rdca-dap","status":"publish","type":"post","link":"https:\/\/rarediseases.org\/es\/season-finale-the-fdas-dr-kathleen-donohue-and-rdca-dap\/","title":{"rendered":"Season Finale: The FDA&#8217;s Dr. Kathleen Donohue and RDCA- DAP"},"content":{"rendered":"<p>Today on NORDpod, Andrew MacDowell stands in for Matthew Zachary, and he welcomes <a href=\"https:\/\/www.cuimc.columbia.edu\/pulmonary\/faculty-and-staff\/kathleen-donohue-md\" rel=\"noopener noreferrer nofollow\" target=\"_blank\">Dr. Kathleen Donohue<\/a>, Director of the <a href=\"https:\/\/www.fda.gov\/about-fda\/center-drug-evaluation-and-research-cder\/office-rare-diseases-pediatrics-urologic-and-reproductive-medicine-division-rare-diseases-and\" rel=\"noopener noreferrer nofollow\" target=\"_blank\">Division of Rare Diseases and Medical Genetics, at the FDA\u2019s Office of New Drugs<\/a>. Over 350 million people worldwide have a rare disease, yet only 10% of rare diseases have an FDA-approved treatment. Dr. Donohue oversees the national hub designed to move the needle on that statistic, providing a shared pool of resources to spark new discoveries and speed up the creation of new therapies for rare diseases. Listen for the subtle sounds of the wild thunderstorm that rolls in during their taping as they talk through the critical role patient advocacy groups play in bringing rare disease patients into making these discoveries happen. Learn about the RDCA-DAP: the all-important central repository of shared data about rare diseases, with a very alphabet-soupy name. They also cover the powerful need for advocacy groups to ensure the data they collect from patients is gathered in a way that makes it possible for them to submit it to RDCA- DAP. NORDpod is the official podcast of the National Organization for Rare Disorders. For more information, email nordpod@rarediseases.org and visit https:\/\/rarediseases.org. RDCA-DAP\u00ae is fully funded with a federal grant awarded to the Critical Path Institute: www.c-path.org\/fda-acknowledgement. https:\/\/c-path.org\/fda-acknowledgement.<\/p>\n<p>See Privacy Policy at <a href=\"https:\/\/art19.com\/privacy\" rel=\"noopener noreferrer nofollow\" target=\"_blank\">https:\/\/art19.com\/privacy<\/a> and California Privacy Notice at <a href=\"https:\/\/art19.com\/privacy#do-not-sell-my-info\" rel=\"noopener noreferrer nofollow\" target=\"_blank\">https:\/\/art19.com\/privacy#do-not-sell-my-info<\/a>.<\/p>\n<p><strong><a href=\"https:\/\/chrt.fm\/track\/758825\/rss.art19.com\/episodes\/8ebb1db4-dfe2-4b02-b73b-a507d699c634.mp3?rss_browser=BAhJIgxNb3ppbGxhBjoGRVQ%3D--4f04cd103bfdd3e94cbbb356ead53321a4d63e94\" target=\"_blank\" rel=\"noopener nofollow\">Be sure to listen, download and subscribe!<\/a><\/strong><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Today on NORDpod, Andrew MacDowell stands in for Matthew Zachary, and he welcomes Dr. Kathleen Donohue, Director of the Division of Rare Diseases and Medical Genetics, at the FDA\u2019s Office &hellip; <\/p>\n<p class=\"link-more\"><a href=\"https:\/\/rarediseases.org\/es\/season-finale-the-fdas-dr-kathleen-donohue-and-rdca-dap\/\" class=\"more-link\">Continue reading<span class=\"screen-reader-text\"> &#8220;Season Finale: The FDA&#8217;s Dr. Kathleen Donohue and RDCA- DAP&#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":[2828],"tags":[2803,2229,2804,1814,2802,2799,1333,1278,225,2805,360,798,2046,2045,797,315,209,219,228,2798,2800,2399,1521,1334,2801],"class_list":["post-59421","post","type-post","status-publish","format-standard","hentry","category-nordpod","tag-community","tag-covid-19","tag-digital-health","tag-living-rare","tag-living-strong","tag-matthew-zachary","tag-mike-porath","tag-national-organization-for-rare-disorders","tag-nord","tag-nordpod","tag-peter-saltonstall","tag-rare-cancer","tag-rare-cancer-coalition","tag-rare-cancer-day","tag-rare-cancers","tag-rare-disease","tag-rare-disease-community","tag-rare-disease-day","tag-rare-diseases","tag-stupid-cancer","tag-stupid-cancer-show","tag-telehealth","tag-telemedicine","tag-the-mighty","tag-voice-of-rare-disease"],"acf":[],"_links":{"self":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/59421","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=59421"}],"version-history":[{"count":0,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/59421\/revisions"}],"wp:attachment":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/media?parent=59421"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/categories?post=59421"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/tags?post=59421"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}