Published 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.
Read morePublished September 29, 2020 by NORD
SCREENING NEWBORNS FOR RARE DISEASES: THE IMPORTANCE OF CONFIRMATORY TESTING AND COLLABORATION By José Abdenur, MD and Rebekah Bressi, CGC ”Newborn screening is one of the most successful public health …
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