Published 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 …
Read morePublished March 20, 2020 by NORD
The health and safety of those with rare diseases and their caregivers are always our top priorities at the National Organization for Rare Disorders (NORD). We know our members are …
Continue reading “COVID-19 Resources for Non-profit Leaders and the Community”
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