Published 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 November 3, 2020 by NORD
NORD joined a coalition of 33 other patient organizations representing millions of people with pre-existing conditions to release our top priorities for a new administration. “The 100 Days Agenda: A …
Read morePublished November 2, 2020 by NORD
[carousel id=”48517″] One of the most important gatherings of the Krabbe disease community occurred in collaboration with the US Food and Drug Administration (FDA) on October 29, and it was 100% virtual with live, interactive components. FDA regulators, academic …
Continue reading “NORD and Patient Advocacy Groups Host an EL-PFDD Meeting on Krabbe Disease”
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 15, 2020 by NORD
For those in the rare community, one of the few positives that have come from the global COVID-19 pandemic has been the wider availability of telehealth services. Through surveys, virtual …
Continue reading “NORD Issues Report on Ensuring Access to Telehealth for Rare Diseases”
Read morePublished October 15, 2020 by NORD
A new article on PsychologyToday.com, “People with Rare Diseases Need Better Social Support,” examines a new study that shows which types of support most benefit those with rare diseases. NORD …
Continue reading “NORD mentioned, RareInsights fact sheet featured in Psychology Today article”
Read morePublished October 14, 2020 by NORD
NORD and the Critical Path Institute (C-Path) are collaborating on a new initiative, the Rare Disease Cures Accelerator-Data and Analytics Platform (RDCA-DAP), bringing together data from different sources, making it available for …
Read morePublished October 13, 2020 by NORD
By Jill L. Pollander, RN, MSN, Director of Patient Services, NORD I first met the Juneja family several months ago. It was an amazing telephone conference call (life and work were remote by then), one that …
Continue reading “Quality of Life and Butterfly Wishes”
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 …
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