Medical Archives - NORD (National Organization for Rare Disorders)

September 29, 2020

TOPIC: Featured News, Medical, Patients & Members, Newborn Screening

Newborn Screening: The HCP Perspective on the Importance of Confirmatory Testing and Collaboration

Posted at September 9, 2020 08:27 am by Laura Mullen

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 initiatives that allows physicians to prevent the disability or death of thousands of children every year. Providing a timely diagnosis and treatment for families is among the most fulfilling… Read More

Tags: HHS, Rare Action Network, Department of Health and Human Services, newborn screening, MD, Baby's First Test, CHOC Children’s Hospital, CHOC Children’s, José Abdenur, Rebekah Bressi

September 1, 2020

TOPIC: Featured News, Medical, Advocacy, Newborn Screening

September is Newborn Screening Awareness Month

Posted at September 9, 2020 08:25 am by Laura Mullen

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 it’s possible your state doesn’t screen for a disease that it is recommended to? Do you know what your newborn is screened for and how?

I knew that my baby was… Read More

Tags: newborn screening, MPS I Hurler syndrome, MPS I, rare lysosomal storage disorder, IV infusion therapy, bone marrow transplant, Delaware

August 17, 2020

TOPIC: Featured News, Medical, Advocacy

NORD Releases Four Guiding Principles on Telehealth Issues

Posted at August 8, 2020 04:11 pm by Laura Mullen

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 already significant challenges that come from living with, or caring for, someone with a rare disease. Though many challenges remain, the expansion of… Read More

Tags: Congress, health insurance, covid-19, telehealth, Trump Administration, state governments

June 22, 2020

TOPIC: Featured News, Medical, Patients & Members

NORD’s New Genome Editing Videos Address Patient/Caregiver Questions

Posted at June 6, 2020 08:31 am by Laura Mullen

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 rare diseases. The videos address questions shared with NORD by our members and social media followers.

These short, animated videos answer basic questions such as “What is genome editing?”… Read More

Tags: Gene therapy, genome editing, PhD, NIH National Center for Advancing Translational Sciences, Deanna Portero, Philip John (P.J.) Brooks, Editas Medicine

April 21, 2020

TOPIC: Featured News, Medical, Research

NORD’s Director of Research Programs Publishes Article on Rare Disease Research in the 2020 Rare Neurological Disease Special Report

Posted at April 4, 2020 03:03 pm by Laura Mullen

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 Report. The feature, “Now Is The Time For Research On Rare Diseases,” details the importance of natural history studies, the role of patients and caregivers as… Read More

Tags: Rare disease research, Rare Neurological Disease Special Report, Vanessa Boulanger, Frontline Medical Communications

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