US EditionMontana Establishes Rare Disease Advisory Council to Support Residents Living with Rare Conditions
- On May 13, 2025, Governor Greg Gianforte signed House Bill 943 in Helena, creating a new state council dedicated to supporting individuals affected by rare diseases in Montana.
- The bill, introduced on March 31, 2025, is part of NORD's Project RDAC initiative launched in November 2020 to create dedicated councils in every state.
- Montana's RDAC includes 17 members and uniquely involves the state's public health laboratory representative to emphasize newborn screening importance.
- Montana backed the council with a $16,000 appropriation from day one, recognizing that only about 5% of more than 10,000 rare diseases have FDA-approved treatments.
- The council aims to amplify patient voices in policy, help policymakers better serve rare disease residents, and address challenges like diagnosis delays and high medical costs.
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Montana House bill a triumph for families battling serious medical conditions
In a victory for families facing severe health challenges, House Bill 544 has been signed into law by Gov. Greg Gianforte, marking a transformative step in ensuring access to vital prescription drugs, specifically biologics for people with serious medical conditions. The bill's passage represents the culmination of tireless advocacy spearheaded by a dedicated group of supporters, including a determined mom from Missoula, who took their fight fro…
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