Montana Establishes Rare Disease Advisory Council to Support Residents Living with Rare Conditions

NORD's Advocacy helps Montana become 32^nd state to create a dedicated council

HELENA, Mont., May 14, 2025 /PRNewswire/ -- The National Organization for Rare Disorders (NORD^®) celebrates Montana Gov. Greg Gianforte's signing into law House Bill 943 to establish the state's 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.

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

"RDACs 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 — from medical nutrition coverage, step therapy reform, and Medicaid eligibility expansions," said NORD Chief Executive Officer Pamela K. Gavin. "Montana's 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."

With this legislation, Montana joins states like Arizona, which just established its RDAC this week, 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.

"It was an honor to sponsor House Bill 943 in the recently completed session of the Montana Legislature" said Representative Paul Tuss of Havre, Mont., who was the chief sponsor of HB 943 and who lost both his mother and wife to amyotrophic lateral sclerosis (ALS).  "HB 943 establishes the Montana Rare Disease Advisory Council, and for the first time ever will engage our state's rare disease community in a meaningful way to more fully understand their needs.  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."  

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.

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.

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.

"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 Clark Hansen, Managing Director of Advocacy, ALS Association.

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.

Individuals can get involved and support their state's rare disease community by joining NORD's Rare Action Network^® and learning more about NORD's Project RDAC and Rare Disease Advisory Councils.

About the National Organization for Rare Disorders
With a 42-year history of advancing care, treatments, and policy, the National Organization for Rare Disorders (NORD^®) is the leading and longest-standing patient advocacy group for the more than 30 million Americans living with a rare disease. A nonpartisan, independent 501(c)(3) nonprofit, NORD is dedicated to individuals with rare diseases and the organizations that serve them. NORD, along with its more than 350 patient organization members, is committed to improving the health and well-being of people with rare diseases by driving advances in care, research, and policy. 

SOURCE National Organization for Rare Disorders (NORD®)