{"id":278944,"date":"2025-05-14T12:56:09","date_gmt":"2025-05-14T16:56:09","guid":{"rendered":"https:\/\/rarediseases.org\/?p=278944"},"modified":"2025-12-22T14:15:22","modified_gmt":"2025-12-22T19:15:22","slug":"montana-establishes-rare-disease-advisory-council","status":"publish","type":"post","link":"https:\/\/rarediseases.org\/es\/montana-establishes-rare-disease-advisory-council\/","title":{"rendered":"Montana Establishes Rare Disease Advisory Council to Support Residents Living with Rare Conditions"},"content":{"rendered":"

NORD\u2019s <\/span>a<\/span>dvocacy helps <\/span>Montana become<\/span><\/span> 32<\/span><\/span>nd<\/span><\/span> state to create a dedicated <\/span>council<\/span><\/span><\/em><\/p>\n

HELENA, MONT., May\u00a014, 2025 \u2014 <\/span><\/b>The National Organization for Rare Disorders (NORD\u00ae<\/sup>) celebrates Montana Gov. Greg Gianforte\u2019s signing into law House Bill 943 to establish the state\u2019s Rare Disease Advisory Council (RDAC). The legislation creates a dedicated 17-member council that will provide guidance, education, and recommendations to help policymakers better serve Montanans living with rare diseases.<\/span>\u00a0<\/span><\/p>\n

This new law represents the <\/span>32nd RDAC<\/span> established since NORD launched Project RDAC<\/a> in November 2020, an initiative aimed at creating well-functioning RDACs in every state. The bill’s swift passage \u2014 moving from introduction on March 31 to the governor’s signature on May 13 \u2014 demonstrates Montana’s commitment to addressing the needs of its rare disease community.<\/span>\u00a0<\/span><\/p>\n

\u201cRDACs provide a crucial voice for patients in policy discussions. They are a foundational component in a larger ecosystem of state policies that must work together \u2014 from medical nutrition coverage, step therapy reform, and Medicaid eligibility expansions,” said <\/span>NORD Chief Executive Officer Pamela K. Gavin<\/strong>.<\/span> \u201cMontana\u2019s council will provide a structured pathway for patients’ voices to reach policymakers, helping to address the heartache, isolation, and endless hurdles that can come with rare disease diagnoses.\u201d<\/span>\u00a0<\/span><\/p>\n

With this legislation, Montana joins states like Arizona, which just established its RDAC this week<\/a>, and nearby states like Colorado and Utah in creating a formalized structure to address rare disease challenges at the state policy level. The council will conduct needs assessments, develop policy recommendations, and identify resources to improve patient access to specialists, affordable healthcare coverage, diagnostics, and timely treatments<\/span><\/p>\n

\u201cIt was an honor to sponsor House Bill 943 in the recently completed session of the Montana Legislature\u201d said <\/span>Representative Paul Tuss of Havre<\/strong>, Mont.<\/strong>, who was the chief sponsor of HB 943 and who lost both his mother and wife to <\/span>amyotrophic lateral sclerosis<\/span> (ALS). \u201cHB 943 establishes the Montana Rare Disease Advisory Council, and for the first time ever will engage our state\u2019s rare disease community in a meaningful way to more fully understand their needs.\u00a0 It will also help determine how state government can play a positive role in helping our citizens with rare diseases, along with their families and caregivers.\u201d\u00a0\u00a0 <\/span>\u00a0<\/span><\/p>\n

Montana’s RDAC includes several features that set it apart from other states, such as including a representative from the state’s public health laboratory in recognition of the critical role of newborn screening in early detection of rare diseases.\u00a0<\/span>\u00a0<\/span><\/p>\n

The council also reserves seats specifically for rare disease patients and caregivers, ensuring those with firsthand experience have a place at the table. And unlike many states that established councils without initial funding, Montana backed its commitment with a $16,000 appropriation of state funding from day one, providing resources needed to make meaningful progress.<\/span>\u00a0<\/span><\/p>\n

NORD works with thousands of grassroots advocates across the United States to advance federal and state policies that benefit the more than 30 million Americans living with a rare disease, defined as any disease that impacts fewer than 200,000 people. This work includes close collaboration with numerous patient advocacy organizations, uniting the rare disease community’s voice.<\/span>\u00a0<\/span><\/p>\n

“Today, we celebrate a big step forward for the rare disease community with the passage of Montana HB 943! This new legislation establishes the Montana Rare Disease Advisory Council, which will help in elevating the voice of patients with rare diseases. Thank you, Montana, for leading the way!” said <\/span>Clark Hansen, Managing Director of Advocacy, ALS Association<\/strong>, a NORD Member Organization<\/a>.<\/span>\u00a0<\/span><\/p>\n

Life with a rare disease poses many challenges for patients and their families. Getting an accurate diagnosis can take years for some rare disease patients, and even when a diagnosis is secured, only about 5% of the more than 10,000 known rare diseases have a Food and Drug Administration (FDA) approved treatment. Direct medical costs for those living with a rare disease have been shown to be three to five times higher than someone of similar age who does not have a rare disease.<\/span>\u00a0<\/span><\/p>\n

Individuals can get involved and support their state\u2019s rare disease community by joining NORD\u2019s Rare Action Network\u00ae<\/sup><\/a> and learning more about NORD\u2019s Project RDAC and Rare Disease Advisory Councils<\/a>.\u00a0<\/strong><\/p>\n","protected":false},"excerpt":{"rendered":"

NORD\u2019s advocacy helps Montana become 32nd state to create a dedicated council HELENA, MONT., May\u00a014, 2025 \u2014 The National Organization for Rare Disorders (NORD\u00ae) celebrates Montana Gov. Greg Gianforte\u2019s signing … <\/p>\n

Continue reading “Montana Establishes Rare Disease Advisory Council to Support Residents Living with Rare Conditions”<\/span><\/a><\/p>\n","protected":false},"author":13,"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":[4129,232,4066,4364,2572],"tags":[4357],"class_list":["post-278944","post","type-post","status-publish","format-standard","hentry","category-advocacypress-releases","category-advocacy","category-press-releases-advocacy","category-press-releases","category-rdacs","tag-ran-2025-export"],"acf":[],"_links":{"self":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/278944","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\/13"}],"replies":[{"embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/comments?post=278944"}],"version-history":[{"count":0,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/278944\/revisions"}],"wp:attachment":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/media?parent=278944"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/categories?post=278944"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/tags?post=278944"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}