Rare Disease News

NORD CEO Statement: Navigating Proposed Policy Changes and Their Impact on Rare Disease Advocacy

Published February 14, 2025 by NORD

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There are several proposed policy changes occurring across government entities, many of which have the potential to impact the rare disease community. At the National Organization for Rare Disorders (NORD®), …

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Mississippi Enacts Critical Reform to Improve Access to Care for the 1 in 10 State Residents Living with a Rare Disease

Published April 16, 2024 by NORD

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Since NORD launched Project RDAC in 2020, Mississippi becomes the 28th state to establish an RDAC to better focus public policy efforts for people living with rare diseases. JACKSON, MS, …

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Rare Disease Advocates and Supporters Share the Importance of Raising Awareness Ahead of Rare Disease Day 2023

Published November 16, 2022 by NORD

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With 100 days till Rare Disease Day 2023, organizations and individuals across the country join the National Organization for Rare Disorders (NORD) to help make a difference for rare disease patients …

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Maybe Obscure to You, but Life-Changing for Millions of Americans

Published November 15, 2022 by NORD

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126 Organizations Urge Congress to Include Critical FDA Programs and Reforms in Year-End Spending Bill In a letter authored by NORD and signed by 126 organizations representing or treating patients …

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