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November 13, 2020

TOPIC: Featured News, Medical, Advocacy, #NORDintheNews

Telehealth Report from NORD Covered in Managed Healthcare Executive

Posted at November 11, 2020 02:21 pm by Valaree DonFrancesco

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 expand coverage for telehealth services during the pandemic, including removing barriers for Medicare patients. Plus, most states are allowing out-of-state healthcare providers in good standing to practice telehealth across state… Read More

October 9, 2020

TOPIC: Press Releases, Featured News, Medical, Members, Research, Advocacy, Industry, Events

NORD Highlights New Era of Innovation and Public Health Awareness in Virtual 2020 Rare Diseases and Orphan Products Breakthrough Summit

Posted at October 10, 2020 10:45 am by Valaree DonFrancesco

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 by rare diseases has presented the conference exclusively… Read More

September 29, 2020

TOPIC: Featured News, Medical, 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 Valaree DonFrancesco

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

September 1, 2020

TOPIC: Medical, Advocacy, Newborn Screening, Featured News

September is Newborn Screening Awareness Month

Posted at September 9, 2020 08:25 am by Valaree DonFrancesco

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

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 Valaree DonFrancesco

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