{"id":91026,"date":"2022-08-26T12:30:23","date_gmt":"2022-08-26T16:30:23","guid":{"rendered":"https:\/\/rarediseases.org\/what-rare-disease-patient-advocacy-groups-are-doing-to-mitigate-the-effects-of-disparities\/"},"modified":"2022-08-26T12:30:23","modified_gmt":"2022-08-26T16:30:23","slug":"what-rare-disease-patient-advocacy-groups-are-doing-to-mitigate-the-effects-of-disparities","status":"publish","type":"post","link":"https:\/\/rarediseases.org\/es\/what-rare-disease-patient-advocacy-groups-are-doing-to-mitigate-the-effects-of-disparities\/","title":{"rendered":"What Rare Disease Patient Advocacy Groups Are Doing to Mitigate the Effects of Disparities"},"content":{"rendered":"<p>Rare disease patients experience inequities in diagnosis, care, and research due to a paucity of research, lack of treatments, complex needs for clinical care, and small and dispersed patient populations, among other reasons. Marginalized communities \u2013 like low-income, rural, communities of color, LGBTQ, and religious communities \u2013 experience additional barriers in accessing clinical care and are underrepresented in research and clinical trials.<\/p>\n<p>NORD&#8217;s Director of Membership, Debbie Drell, along with patient advocate, Ashanthi DeSilva, and the President and CEO of the Alliance to Cure Cavernous Malformation, Connie Lee, co-authored the article for the prestigious rare disease journal, <a href=\"https:\/\/meridian.allenpress.com\/aph\" rel=\"nofollow noopener\" target=\"_blank\">Advances in Pulmonary Hypertension<\/a>, which defined disparities in rare diseases, provided case studies from NORD Member Organizations, and highlighted NORD\u2019s work in mitigating the effects of health disparities.<\/p>\n<p><a href=\"https:\/\/meridian.allenpress.com\/aph\/article\/21\/2\/35\/483290\/What-Rare-Disease-Patient-Advocacy-Groups-Are\" rel=\"nofollow noopener\" target=\"_blank\"><strong>Read the full piece<\/strong><\/a>.<\/p>\n","protected":false},"excerpt":{"rendered":"<p>Rare disease patients experience inequities in diagnosis, care, and research due to a paucity of research, lack of treatments, complex needs for clinical care, and small and dispersed patient populations, &hellip; <\/p>\n<p class=\"link-more\"><a href=\"https:\/\/rarediseases.org\/es\/what-rare-disease-patient-advocacy-groups-are-doing-to-mitigate-the-effects-of-disparities\/\" class=\"more-link\">Continue reading<span class=\"screen-reader-text\"> &#8220;What Rare Disease Patient Advocacy Groups Are Doing to Mitigate the Effects of Disparities&#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":[2394],"tags":[4078,4076,4075,4077,2231],"class_list":["post-91026","post","type-post","status-publish","format-standard","hentry","category-nordinthenews","tag-advances-in-pulmonary-hypertension","tag-health-disparities","tag-health-disparity","tag-journal","tag-pulmonary-hypertension"],"acf":[],"_links":{"self":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/91026","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=91026"}],"version-history":[{"count":0,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/91026\/revisions"}],"wp:attachment":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/media?parent=91026"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/categories?post=91026"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/tags?post=91026"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}