{"id":59085,"date":"2020-01-07T13:08:48","date_gmt":"2020-01-07T18:08:48","guid":{"rendered":"https:\/\/rarediseases.org\/nord-survey-to-better-understand-rare-disease-diagnosis-care-and-treatment-in-the-us-take-part-in-our-30-year-follow-up-2\/"},"modified":"2020-01-07T13:08:48","modified_gmt":"2020-01-07T18:08:48","slug":"nord-survey-to-better-understand-rare-disease-diagnosis-care-and-treatment-in-the-us-take-part-in-our-30-year-follow-up-2","status":"publish","type":"post","link":"https:\/\/rarediseases.org\/es\/nord-survey-to-better-understand-rare-disease-diagnosis-care-and-treatment-in-the-us-take-part-in-our-30-year-follow-up-2\/","title":{"rendered":"NORD Survey to Better Understand Rare Disease Diagnosis, Care and Treatment in the US: Take Part in Our 30 Year Follow-up"},"content":{"rendered":"<p><img loading=\"lazy\" decoding=\"async\" class=\"alignnone size-full wp-image-41994\" style=\"max-width: 100%; height: auto;\" src=\"https:\/\/rarediseases.org\/wp-content\/uploads\/revslider\/homepage\/slide3.jpg\" alt=\"\" width=\"2020\" height=\"784\" \/><\/p>\n<p><span style=\"font-weight: 400;\">At NORD, our priority is advancing rare disease research and innovation by working together to overcome critical challenges. The input of patients and caregivers plays an integral role in getting beyond obstacles and moving towards a brighter future for the rare disease community.<\/span><\/p>\n<p><span style=\"font-weight: 400;\">In 1989 and again in 2003, NORD conducted a survey to better understand the barriers and facilitators of rare disease diagnosis, care and treatment in the United States. Today, NORD is conducting a 30 year follow-up to compare the information over time.<\/span><\/p>\n<p><span style=\"font-weight: 400;\">There is still time to take part in our follow-up survey. Please click<\/span><a href=\"https:\/\/nationalorganizationforraredisorders.cmail20.com\/t\/j-l-cjrkkiy-tlluykhily-f\/\" rel=\"nofollow noopener\" target=\"_blank\"> <span style=\"font-weight: 400;\">here<\/span><\/a><span style=\"font-weight: 400;\"> to participate and share your journey. We appreciate your time!\u00a0<\/span><\/p>\n<p><i><span style=\"font-weight: 400;\">The survey should take about\u00a0 5-10 minutes to complete. If you have any questions please reach out to\u00a0 <\/span><\/i><i><span style=\"font-weight: 400;\">research@rarediseases.org<\/span><\/i><i><span style=\"font-weight: 400;\">.<\/span><\/i><\/p>\n<style>\n.size-post-thumbnail {<br \/>display:none;<br \/>}<br \/><\/style>\n","protected":false},"excerpt":{"rendered":"<p>At NORD, we know that patient-powered initiatives change the world.<\/p>\n","protected":false},"author":1,"featured_media":12790,"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":[190,192],"tags":[2121,2122,266],"class_list":["post-59085","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-featured-news","category-patients-members","tag-nord-survey","tag-patient-powered-initiatives","tag-rare-disease-research"],"acf":[],"_links":{"self":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/59085","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=59085"}],"version-history":[{"count":0,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/59085\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/media\/12790"}],"wp:attachment":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/media?parent=59085"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/categories?post=59085"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/tags?post=59085"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}