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Archives for: October 28th, 2020

NORD Announces Ten New Rare Disease Registries, Thanks to Multi-Year Grant from Shire

Written by Valaree DonFrancesco on September 11, 2018

Washington, D.C., September 11, 2018—The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, has announced the addition of ten new rare disease registries, made possible through a multi-year grant award from Shire.

NORD’s IAMRARETM Registry Program provides a web-based tool… Read More

NORD Launches RareInsights, New Initiative to Support Data-Driven Advocacy, and Presents 5 Myths About Orphan Drugs and the Orphan Drug Act

Written by Valaree DonFrancesco on May 29, 2018

Washington, D.C., May 30, 2018—The National Organization for Rare Disorders (NORD) today launched RareInsights™, its new initiative to expand public knowledge of rare diseases and translate that knowledge into real-world solutions for patients and families, and kicked off the program with the  infographic 5… Read More

NORD Announces Three New Hires to Lead Research, Education and Business Development Programs

Written by Jennifer Huron on October 10, 2017

Danbury, CT, October 10, 2017The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization dedicated to helping the 30 million Americans with rare diseases, announces the appointment of three new hires: Vanessa Boulanger, Director of Research Programs; Sika Dunyoh, Director of Education Programs; and Alexa Moore, Vice President… Read More