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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

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

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

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