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Policy Statements

For decades, NORD has pursued federal and state policies that will change the lives of Americans impacted by rare diseases for the better. NORD’s work can be viewed below. This page is updated daily to provide timely information. Please contact us if you have questions or need additional information.

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Policy Statements

Coalition letter urging the Department of Health and Human Services to issue additional guidance to prevent discrimination for triaging and health care during the COVID-19 pandemic

Published: May 20, 2020
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Coalition letter to Louisiana Governor Edwards requesting the state adopt a policy that refrains from discriminating against people with disabilities and chronic conditions during the COVID-19 emergency

Published: May 8, 2020
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Coalition letter to Connecticut Governor Lamont on the state’s document titled “Standards of Care: Providing Health Care During A Prolonged Public Health Emergency” and requesting that he continue to work with the disability and chronic care community as the state develops additional guidance during COVID-19

Published: May 8, 2020
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Coalition letter to New Hampshire Governor Sununu requesting the state adopt a policy that refrains from discriminating against people with disabilities and chronic conditions during the COVID-19 emergency

Published: May 7, 2020
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Coalition letter to New Jersey Governor Murphy highlighting concerns in recent guidance and requesting that he continue to work with the disability and chronic care community as the state develops additional guidance during COVID-19

Published: May 1, 2020
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