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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 Valaree DonFrancesco

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 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 Valaree DonFrancesco

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

February 28, 2020

TOPIC: Press Releases, Featured News, Medical, Research

NORD Launches Natural History Study for Undiagnosed Rare Diseases

Posted at February 2, 2020 08:00 am by Valaree DonFrancesco

Washington, DC, February 28, 2020—The National Organization for Rare Disorders (NORD)®, the leading independent nonprofit organization representing over 25 million Americans with rare diseases, today launched the Undiagnosed Rare Disease Registry, a new study to collect de-identified information about hard-to-solve medical cases that will enable researchers to perform analyses at a scale previously not possible.

“With the Undiagnosed Rare Disease… Read More

February 11, 2020

TOPIC: Press Releases, Featured News, Events

NORD Introduces This Year’s Rare Disease-Fighting Super Group: The 2020 Rare Impact Award Honorees!

Posted at February 2, 2020 10:17 am by Valaree DonFrancesco

Washington, DC, February 11, 2020—The National Organization for Rare Disorders (NORD®) has announced this year’s roster of rare disease change-makers, the 2020 Rare Impact Award honorees. These exceptional individuals, organizations and industry innovators will be honored for their outstanding work for the rare disease community on May 15, 2020, in Cleveland, Ohio. The 2020 Rare Impact Awards program will… Read More

January 30, 2020

TOPIC: Press Releases, Featured News, Advocacy

NORD State of the States Report Shows Key Policy Improvements Were Achieved by States in 2019, But More Progress Is Needed to Support Americans Living with Rare Diseases

Posted at January 1, 2020 02:16 pm by Valaree DonFrancesco

Washington, DC, January 30, 2020—According to the 5th Edition of the “State of the States Report,” released today by the National Organization for Rare Disorders (NORD®) and its Rare Action Network (RAN™), while many US states took powerful steps forward in 2019, there is major work yet to be done on a number of policy issues critical to over… Read More