Research Archives - NORD (National Organization for Rare Disorders)

September 10, 2020

TOPIC: Press Releases, Featured News, Patients & Members, Research, Advocacy, Industry

2020 NORD Summit to Feature Leading Experts in Public Policy, Patient Advocacy, Rare Disease Research and Regulatory Science

Posted at September 9, 2020 10:29 am by Laura Mullen

Washington, DC, September 10, 2020–At a time when it is vitally important for the rare disease community to come together, the National Organization for Rare Disorders (NORD®) has announced a program of broad-ranging topics with speakers of unparalleled expertise for the 2020 NORD Rare Diseases and Orphan Products Breakthrough Summit, taking place… Read More

Tags: HHS, Peter L. Saltonstall, FDA, NIH, NORD Summit, Center for Drug Evaluation and Research, Peter Marks, Rare Diseases & Orphan Products Breakthrough Summit, MD, covid-19, US Department of Health and Human Services, Center for Biologics Evaluation and Research, Center for Innovation in Global Health, Patrizia Cavazzoni, Entering a New Era, Congresswoman Robin Kelly

August 27, 2020

TOPIC: Featured News, Research, RDCA-DAP

New Video Series on the 5 Steps of the Drug Development Process and How RDCA-DAP Can Help

Posted at August 8, 2020 09:27 am by Laura Mullen

There are five steps in the drug development process, which are designed to help ensure that potential new therapies are both safe and effective. Developing medical products for rare diseases encounters many challenges throughout this Read More

August 25, 2020

TOPIC: Featured News, Patients & Members, Research, Advocacy, Industry

NORD CEO Affirms Science Should Guide FDA’s Work

Posted at August 8, 2020 06:18 pm by Valaree DonFrancesco

“Since 1906, FDA’s dedicated career employees have worked tirelessly to ensure that Americans have access to the safest supply of products we rely on every day, including food, drugs and medical devices. As a result, the US regulatory system sets the gold standard for the rest of the world. FDA’s credibility is of utmost importance to ensuring patients and… Read More
Tags: FDA, regulatory agencies

June 22, 2020

TOPIC: Press Releases, Featured News, Research

NORD’s Jayne Holtzer Rare Disease Research Grants Program Continues Its Commitment to Rare Disease Research with New Funding Opportunities

Posted at June 6, 2020 08:57 am by Valaree DonFrancesco

Washington, DC, June 22, 2020 – The National Organization for Rare Disorders® (NORD), the leading independent nonprofit organization representing over 25 million Americans living with rare diseases, today announced the availability of three new funding opportunities to support the study of two rare diseases. The initial application deadline is August 25, 2020.

NORD’s Jayne Holtzer Rare Disease Research Grants Program… Read More

Tags: Vanessa Boulanger, Appendix Cancer and Pseudomyxoma Peritonei, Neuroendocrine Cell Hyperplasia of Infancy, covid-19, NORD’s Jayne Holtzer Rare Disease Research Grants Program

June 2, 2020

TOPIC: Featured News, Patients & Members, Research

New video from NORD and C-Path addresses the question: “What is a Registry?”

Posted at June 6, 2020 09:20 am by Laura Mullen

What is a registry and why are they so important to the rare disease community? Together, NORD and the Critical Path Institute (C-Path) created this video to explain the value in registries and why patients and patient organizations should participate in… Read More

Tags: Rare Diseases, Registry, patient registry, Rare Disease Cures Accelerator Data and Analytics Platform, RDCA-DAP, C-Path, Critical Path Institute, patient organizations

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