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April 3, 2020

TOPIC: Featured News, Research

Fanconi Anemia Research Fund and NORD Launch Natural History Study of Fanconi Anemia

Posted by Laura Mullen

This week, the Fanconi Anemia Research Fund (FARF) and the National Organization for Rare Disorders (NORD) launched the largest-ever study to research Fanconi anemia (FA), a patient-driven natural history registry that will result in a wide variety of clinical findings. Fanconi anemia currently has no cure.

The new study, “An observational study in Fanconi Anemia,” creates a platform for patients… Read More

April 2, 2020

TOPIC: Featured News, Medical

Neurology Reviews and NORD Publish Annual Rare Neurological Disease Special Report

Posted 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 31, 2020

TOPIC: Featured News

NORD Releases 2019 Annual Report, “At the Heart of Progress in Rare Disease”

Posted by Laura Mullen

During times of crisis we are once again reminded of how honored we are to fight for and alongside the rare disease community. Our rare herd is composed of remarkable individuals who truly embody our motto: Alone we are rare. Together we are strong.

We hope you will enjoy taking a look back at 2019 with… Read More

March 30, 2020

TOPIC: Featured News

NORD and EURORDIS-Rare Diseases Europe Issue Joint Statement on COVID-19 and Orphan Drug Legislation

Posted by Laura Mullen

The National Organization for Rare Disorders (NORD®) and EURORDIS-Rare Diseases Europe share the global concern that diagnostics, therapeutics and vaccines to address COVID-19 be developed expeditiously. NORD and EURORDIS represent the 30 million people in the US and 30 million people in the EU living with rare diseases, individuals disproportionately at risk if they contract this disease and will… Read More

March 27, 2020

TOPIC: Featured News, Research

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

Posted 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