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November 19, 2020

TOPIC: Press Releases, Featured News, Research

NORD Releases Report on the State of Rare Disease Diagnosis, Care and Treatment in America Over Three Decades

Posted at November 11, 2020 09:13 am by Laura Mullen

Washington, DC—November 19, 2020: Today, the National Organization for Rare Disorders (NORD®) published comprehensive report through its RareInsights™ initiative: Barriers to Rare Disease Diagnosis, Care, and Treatment in the US: A 30-year Comparative AnalysisAs part of an ongoing mission to generate evidence and data to advanceRead More

November 18, 2020

TOPIC: Press Releases, Featured News, Advocacy, RDACs

NORD Launches Project RDAC, Announces Inaugural Meeting on December 16

Posted at November 11, 2020 09:15 am by Laura Mullen

Washington, DC, November 18, 2020—With a mission of empowering and equipping the rare disease community to effectively engage decision-makers within their state governments, the National Organization for Rare Disorders (NORD®) has launched an initiative that will assist in building well-organized, high-functioning Rare Disease Advisory Councils (RDACs)… Read More

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 Laura Mullen

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 Laura Mullen

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 Laura Mullen

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