Washington, DC, October 28, 2020—As part of its commitment to community engagement and organizational capacity building, the National Organization for Rare Disorders’ (NORD®) RareLaunch® training program will host two days of free workshops to take place in December,
Washington, DC, 10/1/2020 — Today, the National Organization for Rare Disorders (NORD®) opened registration for a natural history study on metachromatic leukodystrophy (MLD), a lethal rare disease currently without an FDA–approved treatment. NORD’s Natural
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
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
Danbury, CT, October 10, 2017—The 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
