{"id":283830,"date":"2026-02-09T13:33:03","date_gmt":"2026-02-09T18:33:03","guid":{"rendered":"https:\/\/rarediseases.org\/?p=283830"},"modified":"2026-02-09T14:17:11","modified_gmt":"2026-02-09T19:17:11","slug":"national-organization-for-rare-disorders-ranks-all-50-states-on-rare-disease-policies","status":"publish","type":"post","link":"https:\/\/rarediseases.org\/es\/national-organization-for-rare-disorders-ranks-all-50-states-on-rare-disease-policies\/","title":{"rendered":"National Organization for Rare Disorders Ranks All 50 States on Rare Disease Policies"},"content":{"rendered":"<h3 style=\"text-align: center;\"><em><span class=\"TextRun SCXW7233036 BCX0\" lang=\"EN-US\" xml:lang=\"EN-US\" data-contrast=\"auto\"><span class=\"NormalTextRun SCXW7233036 BCX0\">Annual state report card highlights progress and persistent gaps in access to care for 30 million Americans<\/span><\/span><\/em><\/h3>\n<h3 style=\"text-align: center;\"><em><span class=\"EOP SCXW7233036 BCX0\" data-ccp-props=\"{&quot;335559739&quot;:0}\"><img loading=\"lazy\" decoding=\"async\" class=\"alignright wp-image-283834 size-medium\" src=\"https:\/\/rarediseases.org\/wp-content\/uploads\/2026\/02\/NRD-2443-RD.org-homepage_thumbnails_SRC-1-300x169.jpg\" alt=\"\" width=\"300\" height=\"169\" srcset=\"https:\/\/rarediseases.org\/wp-content\/uploads\/2026\/02\/NRD-2443-RD.org-homepage_thumbnails_SRC-1-300x169.jpg 300w, https:\/\/rarediseases.org\/wp-content\/uploads\/2026\/02\/NRD-2443-RD.org-homepage_thumbnails_SRC-1-1024x576.jpg 1024w, https:\/\/rarediseases.org\/wp-content\/uploads\/2026\/02\/NRD-2443-RD.org-homepage_thumbnails_SRC-1-768x432.jpg 768w, https:\/\/rarediseases.org\/wp-content\/uploads\/2026\/02\/NRD-2443-RD.org-homepage_thumbnails_SRC-1-1536x864.jpg 1536w, https:\/\/rarediseases.org\/wp-content\/uploads\/2026\/02\/NRD-2443-RD.org-homepage_thumbnails_SRC-1-2048x1152.jpg 2048w\" sizes=\"auto, (max-width: 300px) 100vw, 300px\" \/><\/span><\/em><\/h3>\n<p style=\"text-align: left;\"><b><span data-contrast=\"auto\">WASHINGTON, D.C., Feb.<\/span><\/b><b><span data-contrast=\"auto\">\u00a09<\/span><\/b><b><span data-contrast=\"auto\">, 2026 \u2014<\/span><\/b><span data-contrast=\"auto\">\u00a0Access to care for Americans living with rare diseases still depends heavily on where they live, according to the National Organization for Rare Disorders (NORD<sup>\u00ae<\/sup>), which today released its 2025 State Report Card grading all 50 states and Washington, D.C. on policies affecting more than 30 million Americans, half of whom are children.<\/span><span data-ccp-props=\"{&quot;335559739&quot;:0}\">\u00a0<\/span><\/p>\n<p><span data-contrast=\"auto\">The report finds that while states have made progress in areas such as telehealth and prescription affordability, major gaps\u00a0remain\u00a0in protections that\u00a0determine\u00a0whether people living with rare diseases can access\u00a0timely, life-sustaining care.<\/span><span data-ccp-props=\"{&quot;335559739&quot;:0}\">\u00a0<\/span><\/p>\n<p><span data-contrast=\"auto\">Overall, the nation earned a \u201cB\u201d,\u00a0reflecting incremental improvement. But that national average masks wide disparities among states and leaves many families vulnerable when they need\u00a0care\u00a0most.<\/span><span data-ccp-props=\"{&quot;335559739&quot;:0}\">\u00a0<\/span><\/p>\n<p><strong>Key findings from the 2025 report include:\u00a0<\/strong><\/p>\n<ul>\n<li aria-setsize=\"-1\" data-leveltext=\"\uf0b7\" data-font=\"Symbol\" data-listid=\"1\" data-list-defn-props=\"{&quot;335552541&quot;:1,&quot;335559685&quot;:720,&quot;335559991&quot;:360,&quot;469769226&quot;:&quot;Symbol&quot;,&quot;469769242&quot;:[8226],&quot;469777803&quot;:&quot;left&quot;,&quot;469777804&quot;:&quot;\uf0b7&quot;,&quot;469777815&quot;:&quot;hybridMultilevel&quot;}\" data-aria-posinset=\"1\" data-aria-level=\"1\"><span data-contrast=\"auto\">Medical nutrition coverage\u00a0remains\u00a0one of the weakest policy areas nationwide. Thirteen states received failing grades, and no state earned an A, leaving many patients without access to specialized nutrition\u00a0required\u00a0to manage or survive their disease.<\/span><span data-ccp-props=\"{&quot;134233279&quot;:false,&quot;335559739&quot;:0}\">\u00a0<\/span><\/li>\n<\/ul>\n<ul>\n<li aria-setsize=\"-1\" data-leveltext=\"\uf0b7\" data-font=\"Symbol\" data-listid=\"1\" data-list-defn-props=\"{&quot;335552541&quot;:1,&quot;335559685&quot;:720,&quot;335559991&quot;:360,&quot;469769226&quot;:&quot;Symbol&quot;,&quot;469769242&quot;:[8226],&quot;469777803&quot;:&quot;left&quot;,&quot;469777804&quot;:&quot;\uf0b7&quot;,&quot;469777815&quot;:&quot;hybridMultilevel&quot;}\" data-aria-posinset=\"2\" data-aria-level=\"1\"><span data-contrast=\"auto\">Telehealth access continues to expand, with 43 states earning passing grades, improving access to rare-disease specialists who are often\u00a0located\u00a0far from patients\u2019 homes.<\/span><span data-ccp-props=\"{&quot;134233279&quot;:false,&quot;335559739&quot;:0}\">\u00a0<\/span><\/li>\n<\/ul>\n<ul>\n<li aria-setsize=\"-1\" data-leveltext=\"\uf0b7\" data-font=\"Symbol\" data-listid=\"1\" data-list-defn-props=\"{&quot;335552541&quot;:1,&quot;335559685&quot;:720,&quot;335559991&quot;:360,&quot;469769226&quot;:&quot;Symbol&quot;,&quot;469769242&quot;:[8226],&quot;469777803&quot;:&quot;left&quot;,&quot;469777804&quot;:&quot;\uf0b7&quot;,&quot;469777815&quot;:&quot;hybridMultilevel&quot;}\" data-aria-posinset=\"3\" data-aria-level=\"1\"><span data-contrast=\"auto\">Twenty-two states\u00a0failed to\u00a0protect patients from short-term \u201cjunk\u201d insurance plans, which can exclude essential benefits and treatments:\u00a0a risk heightened after federal agencies deprioritized enforcement of these plans in August 2025, leaving state laws as the primary safeguard for patients.<\/span><span data-ccp-props=\"{&quot;134233279&quot;:false,&quot;335559739&quot;:0}\">\u00a0<\/span><\/li>\n<\/ul>\n<p><span data-contrast=\"auto\">Only four states,\u00a0Colorado, Delaware, Maine, and New Jersey,\u00a0earned overall A grades, while most states clustered in the middle, with 25 earning Bs and 22 earning Cs, underscoring how widely protections still vary by geography.<\/span><span data-ccp-props=\"{&quot;335559739&quot;:0}\">\u00a0<\/span><\/p>\n<p><span data-contrast=\"auto\">\u201cWe applaud the progress over the past year,\u201d said <strong>Pamela K. Gavin, Chief Executive Officer\u00a0<\/strong><\/span><span data-contrast=\"auto\"><strong>of NORD<\/strong>. \u201cBut it\u00a0remains\u00a0unacceptable that access to life-saving care still depends on where\u00a0a family lives. No one is immune to\u00a0acquiring\u00a0a rare disease. It affects millions of families in every state. Policymakers must strengthen protections so patients can access treatment without facing devastating financial hardship.\u201d<\/span><span data-ccp-props=\"{&quot;335559739&quot;:0}\">\u00a0<\/span><\/p>\n<p><span data-contrast=\"auto\">Now in its 11th year, NORD\u2019s State Report Card evaluates state performance across nine key policy areas, including Medicaid eligibility, prescription affordability protections, telehealth, insurance safeguards, and medical nutrition coverage. Improvements in prescription affordability and telehealth helped lift overall performance in 2025, but rollbacks and policy gaps in several states continue to put patients at risk.<\/span><span data-ccp-props=\"{&quot;335559739&quot;:0}\">\u00a0<\/span><\/p>\n<p><span data-contrast=\"auto\">One area of growing concern is the absence of Rare Disease Advisory Councils (RDACs) in many states.\u00a0These councils provide patients and caregivers with a formal voice in shaping healthcare policy and funding priorities.\u00a0Nineteen states still lack an RDAC, limiting direct patient input as states take on more responsibility amid federal pullbacks.<\/span><span data-ccp-props=\"{&quot;335559739&quot;:0}\">\u00a0<\/span><\/p>\n<p><span data-contrast=\"auto\">Since launching Project RDAC in 2020, NORD has helped\u00a0establish\u00a025 of the 33 councils nationwide. In 2025, four states,\u00a0Vermont, Oklahoma, Hawaii, and Pennsylvania,\u00a0introduced legislation to\u00a0establish\u00a0new councils.<\/span><\/p>\n<p><span data-contrast=\"auto\">\u201cEvery Vermonter deserves to be seen, heard, and supported,\u00a0especially those living with rare diseases who too often fall through the cracks of our healthcare system,\u201d said <strong>Rep. Mary-Katherine Stone (D-VT)<\/strong>. \u201cThe Rare Disease Advisory Council is how we start making that commitment real.\u201d<\/span><span data-ccp-props=\"{&quot;335559739&quot;:0}\">\u00a0<\/span><\/p>\n<p><span data-contrast=\"auto\">Additional\u00a0states, including Michigan, New York, Utah, and Washington, introduced legislation to extend or strengthen existing councils. Four of the five most populous states,\u00a0California, Florida, New York, and Pennsylvania,\u00a0currently have RDACs, while Texas does not.<\/span><span data-ccp-props=\"{&quot;335559739&quot;:0}\">\u00a0<\/span><\/p>\n<p><b><span data-contrast=\"auto\">About the Report<\/span><\/b><span data-ccp-props=\"{&quot;335559739&quot;:0}\">\u00a0<\/span><\/p>\n<p><span data-contrast=\"auto\">NORD has issued its State Report Card annually since 2015, evaluating policy data available through December 2025. The report examines nine policy areas affecting access to care for people living with rare diseases.<\/span><span data-ccp-props=\"{&quot;335559739&quot;:0}\">\u00a0<\/span><\/p>\n<p><strong>View the full report and individual state grades at:\u00a0<a href=\"https:\/\/rarediseases.org\/driving-policy\/nord-state-report-card\/\">https:\/\/rarediseases.org\/driving-policy\/nord-state-report-card\/<\/a>\u00a0<\/strong><\/p>\n<p><b><span data-contrast=\"auto\">About the National Organization for Rare Disorders<\/span><\/b><span data-ccp-props=\"{&quot;335559739&quot;:0}\">\u00a0<\/span><\/p>\n<p><span data-contrast=\"auto\">Founded in 1983, the National Organization for Rare Disorders (NORD\u00ae) is a leading independent, nonpartisan, nonprofit patient advocacy organization dedicated to improving the health and lives of more than 30 million Americans living with rare diseases. In partnership with over 350 disease-specific patient organizations, NORD advances rare disease research, care, and policy. Learn more at\u00a0<\/span><a href=\"https:\/\/rarediseases.org\/driving-policy\/nord-state-report-card\/\"><span data-contrast=\"none\">rarediseases.org<\/span><\/a><span data-contrast=\"auto\">.<\/span><span data-ccp-props=\"{&quot;335559739&quot;:0}\">\u00a0<\/span><\/p>\n<p><span data-ccp-props=\"{&quot;335559739&quot;:0}\"><strong> Media contact:\u00a0\u00a0<\/strong><br \/>\nCheryl Herbert<br \/>\nVice President, Marketing &amp; Communications<br \/>\nmedia@rarediseases.org<br \/>\n719-330-4053<br \/>\n<\/span><b><\/b><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Annual state report card highlights progress and persistent gaps in access to care for 30 million Americans WASHINGTON, D.C., Feb.\u00a09, 2026 \u2014\u00a0Access to care for Americans living with rare diseases &hellip; <\/p>\n<p class=\"link-more\"><a href=\"https:\/\/rarediseases.org\/es\/national-organization-for-rare-disorders-ranks-all-50-states-on-rare-disease-policies\/\" class=\"more-link\">Continue reading<span class=\"screen-reader-text\"> &#8220;National Organization for Rare Disorders Ranks All 50 States on Rare Disease Policies&#8221;<\/span><\/a><\/p>\n","protected":false},"author":37,"featured_media":283831,"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":[504,232,4129,190,4066,2572,2624],"tags":[],"class_list":["post-283830","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-press-releases","category-advocacy","category-advocacypress-releases","category-featured-news","category-press-releases-advocacy","category-rdacs","category-state-report-card"],"acf":[],"_links":{"self":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/283830","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\/37"}],"replies":[{"embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/comments?post=283830"}],"version-history":[{"count":0,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/283830\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/media\/283831"}],"wp:attachment":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/media?parent=283830"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/categories?post=283830"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/tags?post=283830"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}