{"id":59304,"date":"2021-05-12T09:00:00","date_gmt":"2021-05-12T13:00:00","guid":{"rendered":"https:\/\/rarediseases.org\/jeff-goldstein-and-nords-rarelaunch-research-ready\/"},"modified":"2021-05-12T09:00:00","modified_gmt":"2021-05-12T13:00:00","slug":"jeff-goldstein-and-nords-rarelaunch-research-ready","status":"publish","type":"post","link":"https:\/\/rarediseases.org\/es\/jeff-goldstein-and-nords-rarelaunch-research-ready\/","title":{"rendered":"Jeff Goldstein and NORD&#8217;s RareLaunch Research Ready"},"content":{"rendered":"<p>On the show today: <a href=\"https:\/\/lungtransplantfoundation.org\/our-people\/\" rel=\"noopener noreferrer nofollow\" target=\"_blank\">Jeff Goldstein<\/a>, President, and Founder of the <a href=\"https:\/\/lungtransplantfoundation.org\" rel=\"noopener noreferrer nofollow\" target=\"_blank\">Lung Transplant Foundation<\/a>, a nonprofit organization that provides education and emotional support for transplant recipients and their caregivers and raises money for lung transplant research. Jeff was diagnosed in his mid-40s in peak health with Idiopathic Pulmonary Fibrosis \u2014 lots of syllables with a very bleak outlook. Eighteen years later, he&#8217;s still here to talk about not just his incredible story but the extraordinary partnership he&#8217;s struck with NORD&#8217;s <a href=\"https:\/\/rarediseases.org\/nord-rarelaunch\/\" rel=\"noopener noreferrer\" target=\"_blank\">RareLaunch Research Ready <\/a>program to kick off their first patient registry for this truly under-voiced community.<\/p>\n<p>We dedicate this episode of NORDpod in memory of Jeff and thank him for sharing his gift and his vision with us.&nbsp;<\/p>\n<p>Follow us on social @NORDpodcast<\/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\/cf829437-5b4c-4ec0-a2a9-aec545e32b0b.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>On the show today: Jeff Goldstein, President, and Founder of the Lung Transplant Foundation, a nonprofit organization that provides education and emotional support for transplant recipients and their caregivers and &hellip; <\/p>\n<p class=\"link-more\"><a href=\"https:\/\/rarediseases.org\/es\/jeff-goldstein-and-nords-rarelaunch-research-ready\/\" class=\"more-link\">Continue reading<span class=\"screen-reader-text\"> &#8220;Jeff Goldstein and NORD&#8217;s RareLaunch Research Ready&#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":[],"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-59304","post","type-post","status-publish","format-standard","hentry","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\/59304","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=59304"}],"version-history":[{"count":0,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/59304\/revisions"}],"wp:attachment":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/media?parent=59304"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/categories?post=59304"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/tags?post=59304"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}