Medical Archives - NORD (National Organization for Rare Disorders)

January 14, 2021

NORD Partners with Frontline Medical Communications on Publications for Medical Professionals in Oncology and Rheumatology

Posted at January 1, 2021 08:14 am by Laura Mullen

As part of its expanded outreach to medical professionals, NORD recently partnered with Frontline Medical Communications (FMC), a division of Medscape, on Rare Diseases Report: Rheumatology and Rare Diseases Report: Cancers, both published in late 2020.

The two special issues are the latest in a series of publications on which NORD and FMC… Read More

Tags: Boston Children's Hospital, Frontline Medical Communications, Harvard Medical School, Fibrolamellar Cancer Foundation, rare cancer coalition, John Hopper, Jim Palma, Rare Diseases Report: Rheumatology, Rare Diseases Report: Cancers, Rare Cancer Foundation, Children’s Hospital and Hackensack Meridian School of Medicine, Rebecca Aune

November 24, 2020

TOPIC: Featured News, Medical, Patients & Members

NORD and Partners Publish Abstract Based on Web-Based Hemophilia A Educational Initiative for Patients, Caregivers and HCPs

Posted at November 11, 2020 08:35 am by Katie Kowalski

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 outcomes-evaluation abstract in conjunction with the 62nd American Society of Hematology (ASH) Annual Meeting. Assessing Patient and Provider Perspectives, Clinical Practice, Behaviors, and Knowledge on Hemophilia A Care is… Read More

Tags: hematology, Hemophilia Federation of America, CME, continuing medical education, hemophilia A, PlatformQ Health, National Hemophilia Foundation, ASH, American Society of Hematology Annual Meeting, Blood

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 Laura Mullen

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

Tags: telehealth services, covid-19, telehealth

October 9, 2020

TOPIC: Press Releases, Featured News, Medical, Patients & 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 Laura Mullen

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

Tags: Peter L. Saltonstall, Capitol Hill, NORD Summit, Rare Diseases and Orphan Products Breakthrough Summit, Cure SMA, Rare Impact Awards, American Porphyria Foundation, MD, US Food and Drug Administration, Takeda, Eversana, Insmed, Retrophin, Cystic Fibrosis Foundation, FDA Commissioner Stephen Hahn

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

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