Published November 24, 2020 by NORD
The National Organization for Rare Disorders (NORD®), in partnership with PlatformQ Health, the Hemophilia Federation of America and the National Hemophilia Foundation, is pleased to announce the publication of an …
Read morePublished November 13, 2020 by NORD
NORD’s recent telehealth report was featured in an article in Managed Healthcare Executive, a digital magazine from MJH Life Sciences, on 11.12.2020: “The federal government took important steps to temporarily …
Continue reading “Telehealth Report from NORD Covered in Managed Healthcare Executive”
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 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 …
Read morePublished September 1, 2020 by NORD
A Personal Reflection from Stephanie Cozine, Delaware Rare Action Network Ambassador Did you know that your baby is screened for different diseases depending on which state you live in? That …
Continue reading “September is Newborn Screening Awareness Month”
Read morePublished August 17, 2020 by NORD
The COVID-19 pandemic has had a huge impact on the rare disease community. NORD has heard from countless patients over the last few months about how this crisis has added to the …
Continue reading “NORD Releases Four Guiding Principles on Telehealth Issues”
Read morePublished June 22, 2020 by NORD
The newest addition to the NORD Rare Disease Video Library is a set of four videos on genome editing, a promising approach to treatment for many people affected by …
Continue reading “NORD’s New Genome Editing Videos Address Patient/Caregiver Questions”
Read morePublished April 21, 2020 by NORD
The National Organization for Rare Disorders (NORD®) is excited to spotlight an article written by NORD’s Director of Research, Vanessa Boulanger, MSc, published in the 2020 Rare Neurological Disease Special …
Read morePublished April 16, 2020 by NORD
The results of a survey on gene therapy conducted by NORD and Frontline Medical Communications (FMC) among physicians and other healthcare professionals were recently announced. The responses indicated significant knowledge …
Read morePublished April 2, 2020 by NORD
Parsipanny, NJ – Frontline Medical Communications (FMC) and the National Organization for Rare Disorders (NORD)® this week announced the release of the 6th annual Rare Neurological Disease Special Report. As …
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