Published January 26, 2021 by NORD
Washington, DC, January 26, 2021—In an effort to provide clear, useful, authoritative information to rare disease patients and caregivers on the COVID-19 vaccines, on January 15 the National Organization for Rare Disorders (NORD®), along with The ALS Association, Cystic Fibrosis Foundation and Muscular …
Read morePublished November 19, 2020 by NORD
Washington, DC—November 19, 2020: Today, the National Organization for Rare Disorders (NORD®) published a comprehensive report through its RareInsights™ initiative: Barriers to Rare Disease Diagnosis, Care, and Treatment in the US: A 30-year Comparative Analysis. As part of an ongoing mission to generate evidence …
Read morePublished November 18, 2020 by NORD
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 …
Continue reading “NORD Launches Project RDAC, Announces Inaugural Meeting on December 16”
Read morePublished November 10, 2020 by NORD
Washington, DC, November 10, 2020—This 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 program. Having launched its first study in 2014, today IAMRARE supports longitudinal data collection …
Read morePublished October 28, 2020 by NORD
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, funded in part through a grant …
Read morePublished October 21, 2020 by NORD
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 …
Continue reading “RDCA-DAP First Year Milestones Highlighted at Virtual Workshop”
Read morePublished October 9, 2020 by NORD
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 …
Read morePublished October 1, 2020 by NORD
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 History Of MEtachromatic Leukodystrophy (HOME) Study represents an opportunity to address an …
Read morePublished September 28, 2020 by NORD
Cleveland, OH, September 28, 2020—A Cure in Sight and the National Organization for Rare Disorders have launched an innovative study to research ocular melanoma, a disease that can cause blindness, …
Read morePublished September 24, 2020 by NORD
For Immediate Release Major Groups Representing Millions of Patients Release Telehealth Principles September 24, 2020 – A coalition of organizations representing millions of patients who live with serious, acute, and chronic …
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