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NORD Releases First-Ever State Progress Report for Rare Diseases

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Leading Advocacy Organization Drives Health Policy Improvements for 30 Million Americans with Rare Diseases through Rare Action™ Network

With patient access to health care becoming increasingly dependent upon state policies, the National Organization for Rare Disorders (NORD)® has developed and released the first-ever State Progress Report to evaluate how states are serving the 30 million Americans with rare diseases.

“By creating the State Progress Report, NORD hopes to provide a road map of where states can improve to help people living with rare diseases,” said NORD President and CEO Peter L. Saltonstall. “Until now, there has been no comprehensive resource to help make sense of the inconsistencies between states.”

In its initial release, the State Progress Report focuses on four key policy areas:  medical foods coverage, prescription cost sharing requirements, newborn screening, and Medicaid eligibility levels.  The 65-page document contains an executive and national summary, key policy sections, detailed appendices with state-by-state breakdowns, maps, contacts and resources.

The report is also a toolkit that provides resources for stakeholders to advocate on these issues.  This includes NORD’s Rare Action™ Network, its grassroots advocacy community that connects advocates and gives them the tools to support the rare disease community in their state.  The progress report offers information on how to sign up for Rare Action and a list of local contacts.

“This is a first step,” said NORD Associate Director of State Policy Tim Boyd. “As expected, there is not a one-size-fits-all approach to addressing many of these issues; however, we aim to provide actionable steps for states that will make meaningful improvements in people’s lives.”

The report will launch with a dedicated page on the NORD website with patient stories, downloadable toolkit with action alerts, and maps.

Saltonstall added, “For more than 33 years, NORD has worked passionately to resolve the unmet medical needs of the 30 million Americans with rare diseases. The State Progress Report is part of our commitment to make sure the voice of rare disease patients is heard.”

NORD announced the State Progress Report at its annual Rare Diseases and Orphan Products Breakthrough Summit, the largest multi-stakeholder rare disease conference and the only one co-sponsored by the U.S. Food & Drug Administration (FDA).


Media Contact: Jennifer Huron, 203.304.7258, [email protected]