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March 27, 2020

TOPIC: Featured News, Research

Pharmaceutical Medicine Publishes Paper by NORD Research Team as a Leading Article

Posted at March 3, 2020 12:19 pm by Laura Mullen

The National Organization for Rare Disorders (NORD®) is excited to announce that a new peer-reviewed manuscript written by members of our research team has been published as a leading article by the journal Pharmaceutical Medicine

The paper, entitled “Establishing Patient Registries for Rare Diseases: Rationale and Challenges,” begins by highlighting common barriers… 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

July 9, 2019

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

New Video on PTLD Added to NORD Rare Disease Video Library

Posted at July 7, 2019 08:34 am by Lisa Sencen

The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 25-30 million Americans living with rare diseases, has added a new video to the NORD Rare Disease Video Library, a resource featuring videos on rare diseases and related topics for patients, caregivers, students, professionals and the public.

The… Read More

June 25, 2019

TOPIC: Featured News, Research

NORD Awards Ten New Grants in Eight Disease States for Rare Disease Research

Posted at June 6, 2019 01:03 pm by Lisa Sencen

Washington, DC, June 25, 2019 The National Organization for Rare Disorders® (NORD), the leading independent nonprofit organization representing the 25-30 million Americans living with rare diseases, has announced ten new grants as part of its Rare Disease Research Grant Program, which celebrates its 30th anniversary in 2019. Research grants have been awarded to the following institutions and investigators:

For… Read More