Published 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 …
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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