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COVID-19 Resource Center

The health and safety of those with rare diseases and their caregivers are always our top priorities at the National Organization for Rare Disorders® (NORD). We stand in solidarity with the rare community and would like to extend support for those impacted by COVID-19, directly and indirectly. By sharing resources on how to be prepared and seek proper care under these unusual circumstances, we hope to educate and empower the community during this unprecedented time.

NORD COVID-19 Resources

NORD COVID-19 Policy Statements

Resources for Nonprofits

Additional COVID-19 Resources

* Information and links here are not necessarily endorsed by NORD but are shared for your consideration.

Official Resources

News from NORD

NORD Supports Rare Disease Nonprofits Impacted by COVID-19 with New Rapid Response Leadership Series

Drawing on NORD’s expertise in capacity-building and nonprofit management during crises, the new program will support rare disease patient organizations through education, training and resources.

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In Support of Rare Disease Patients Impacted by COVID-19, NORD Launches Premium and Limited Medical Relief Program

NORD’s COVID-19 Premium & Medical Relief Program assists eligible rare disease patients facing financial challenges with out of pocket costs of health insurance premiums and limited medical assistance.

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Infographic Illustrates Effects of the COVID-19 Pandemic on Rare Disease Patients and Families

The findings of the recently released NORD COVID-19 Community Survey Report reflect a community directly affected and overwhelmingly concerned about the COVID-19 crisis.

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New Community Survey Findings from NORD Reveal Significant Impact of COVID-19 on Americans Living with Rare Diseases

95% of respondents report being impacted to the detriment of their immediate and long-term health and well-being; 98% reported being gravely worried about COVID-19.

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NORD’s COVID-19 Non-Medical Patient Assistance and Education programs were made possible by generous donations. Thank you to our sponsors.