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May 5, 2020

TOPIC: Press Releases, Featured News, Patients & Members, Research, COVID-19

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

Posted at May 5, 2020 02:46 pm by Laura Mullen

Washington, DC, May 5, 2020–Today, the National Organization for Rare Disorders (NORD®) released the findings of its recent survey on the critical issues and concerns the rare disease community is facing due to the COVID-19 pandemic. The COVID-19 Community Survey Report is published through RareInsights™,Read More

April 24, 2020

TOPIC: Featured News, Advocacy, COVID-19

NORD Joins 400+ Groups to Prevent Discrimination During COVID-19 Triaging

Posted at April 4, 2020 09:00 am by Laura Mullen

Between 25 and 30 million Americans have a rare disease, many of whom are disproportionately at risk of getting sick from COVID-19. According to the Centers for Disease Control and Prevention, in addition to older adults, people of any age who have serious underlying medical conditions like chronic lung disease or asthma, serious heart conditions,… Read More

April 20, 2020

TOPIC: Featured News, Advocacy, COVID-19

Update on NORD’s Recent Advocacy Work on COVID-19 for the Rare Community

Posted at April 4, 2020 11:15 am by Laura Mullen

In this time of crisis and uncertainty, NORD’s policy team has been working to pursue policies at the federal and state levels to address COVID-19 related concerns critical to the rare disease community. 

Protecting Access to Necessary Medical Treatment During the Pandemic

Social distancing is critical for slowing the spread of the coronavirus. But, for many rare… Read More

April 15, 2020

TOPIC: Press Releases, Featured News, Patients & Members, COVID-19

NORD Launches Financial Assistance Program for Rare Disease Community Members Impacted by COVID-19

Posted at April 4, 2020 10:05 am by Laura Mullen

Washington, DC, April 15, 2020— At this time of crisis and with the health, safety and well-being of patients and caregivers as its top priorities, the National Organization for Rare Disorders (NORD®) today launched its COVID-19 Critical Relief Program to provide much-needed assistance to members of the rare community affected by the COVID-19 pandemic. The program provides… Read More

March 30, 2020

TOPIC: Featured News, COVID-19

NORD and EURORDIS-Rare Diseases Europe Issue Joint Statement on COVID-19 and Orphan Drug Legislation

Posted at March 3, 2020 08:34 am by Laura Mullen

The National Organization for Rare Disorders (NORD®) and EURORDIS-Rare Diseases Europe share the global concern that diagnostics, therapeutics and vaccines to address COVID-19 be developed expeditiously. NORD and EURORDIS represent the 30 million people in the US and 30 million people in the EU living with rare diseases, individuals disproportionately at risk if they contract this disease and will… Read More