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November 10, 2020

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

NORD Drives Rare Disease Progress Through Patient-Powered Data With IAMRARE™ Registry Members

Posted at November 11, 2020 09:48 am by Valaree DonFrancesco

Washington, DC, November 10, 2020This year, in conjunction with its rare disease community partners, the National Organization for Rare Disorders (NORD®continued to drive research and innovation through the IAMRARE™ registry programHaving launched its first study in 2014, today IAMRARE supports longitudinal data collection efforts for over 40 rare… Read More

October 28, 2020

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

NORD Announces RareLaunch Workshops to Support Those Seeking to Start Rare Disease Nonprofits or Research Programs 

Posted at October 10, 2020 09:37 am by Valaree DonFrancesco

Washington, DC, October 28, 2020As 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, funded in part through a grant from the… Read More

October 21, 2020

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

RDCA-DAP First Year Milestones Highlighted at Virtual Workshop

Posted at October 10, 2020 11:14 am by Valaree DonFrancesco

TUCSON, Ariz. and WASHINGTON, D.C. October 21, 2020 — The Critical Path Institute (C-Path) and the National Organization for Rare Disorders (NORD®) hosted the Rare Disease Cures Accelerator-Data and Analytics Platform (RDCA-DAP) 2020 Virtual Workshop on Monday, October 19. The platform, funded by a cooperative agreement through the U.S. Food and Drug Administration (FDA), serves as… Read More

October 9, 2020

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

NORD Highlights New Era of Innovation and Public Health Awareness in Virtual 2020 Rare Diseases and Orphan Products Breakthrough Summit

Posted at October 10, 2020 10:45 am by Valaree DonFrancesco

Washington, DC, October 9, 2020—On October 8 and 9, the National Organization for Rare Disorders (NORD®virtually hosted the 2020 Rare Diseases and Orphan Products Breakthrough Summit, the first time the organization representing over 25 million Americans impacted by rare diseases has presented the conference exclusively… Read More

October 1, 2020

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

NORD Launches Innovative Natural History Study on Metachromatic Leukodystrophy (MLD)

Posted at October 10, 2020 10:07 am by Valaree DonFrancesco

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 FDAapproved treatmentNORD’s Natural History OMEtachromatic Leukodystrophy (Read More