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April 2, 2020

TOPIC: Featured News, Medical

Neurology Reviews and NORD Publish Annual Rare Neurological Disease Special Report

Posted at April 4, 2020 02:10 pm by Laura Mullen

Parsipanny, NJ – Frontline Medical Communications (FMC) and the National Organization for Rare Disorders (NORD)® this week announced the release of the 6th annual Rare Neurological Disease Special Report. As the largest Rare Neurological Disease Special Report published to-date, this year’s issue features a unifying theme of the critical nature of multi-national, real-time collaboration that bolsters the… Read More

March 20, 2020

TOPIC: Featured News, Industry, Medical, Patients & Members

COVID-19 Resources for Non-profit Leaders and the Community

Posted at March 3, 2020 09:32 am by Valaree DonFrancesco

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 know our members are working tirelessly to support their communities during this global crisis. Rare disease organizations have felt the impact of the coronavirus pandemic on all elements of our work including mission-critical… Read More

March 5, 2020

TOPIC: Featured News, Medical, Patients & Members, Sticky Posts for Homepage

NORD’s Peter L. Saltonstall on Coronavirus Prevention and Risk for the Rare Community

Posted at March 3, 2020 02:11 pm by Laura Mullen

As information on the coronavirus, which causes COVID-19, dominates the news, we want to share with you guidance from the Centers for Disease Control and Prevention (CDC). The National Organization for Rare Disorders (NORD) continues to monitor the situation with the rare community in mind. The severity of illness or how many people will fall ill from COVID-19 is… Read More

February 28, 2020

TOPIC: Featured News, Medical, Press Releases, 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

January 23, 2020

TOPIC: Featured News, Medical, Patients & Members, Press Releases, Research

NORD Joins with Pyruvate Kinase Deficiency Community to Publish Historic “Voice of the Patient” Report

Posted at January 1, 2020 02:29 pm by Laura Mullen

Washington, DC, January 23, 2020–The National Organization for Rare Disorders (NORD)®, the Foundation for Rare Blood Diseases (SZB) and the pyruvate kinase deficiency community together made history on September 20, 2019 with patients and families sharing their experiences directly with the US Food and Drug Administration (FDA) and other key stakeholders, and first-of-its-kind testimony from the heavily impacted Amish… Read More