Published 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 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 5, 2020 by NORD
The COVID-19 pandemic has caused great fears around drug shortages, the demand for personal protective equipment (PPE) and the status of clinical trial research for rare diseases. On September 16, …
Read morePublished October 1, 2020 by NORD
Today, Nebraska’s Medicaid expansion begins to take effect. This milestone—two years in the making—means that thousands more low-income people, including many who have a rare disease, now have access to …
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 30, 2020 by NORD
#RareCancerDay brings attention to the fact that without research funding, the only option for patients is to endure blanket therapy regimes that are designed for other types of cancers and, …
Continue reading “Voices of Rare Cancer: Courtney’s Story”
Read morePublished September 30, 2020 by NORD
In this week’s Voices of Rare Cancer feature, Lisa shares her experience with cholangiocarcinoma.
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