Medical Archives - NORD (National Organization for Rare Disorders)

April 8, 2021

TOPIC: Medical, Patients & Members, Industry, Members

NORD Expands Gene Therapy Offerings Through New Online Resources

Posted at April 4, 2021 09:00 am by Lisa Sencen

For several years, the National Organization for Rare Disorders (NORD) has prioritized gene therapy education to advance knowledge and promote safe and effective clinical applications to reduce suffering from rare conditions. With this goal in mind, NORD is dedicated to producing a variety of educational resources for patients, caregivers, health care providers, and the public.

One of the newest resources… Read More

Tags: rare disease community, Gene therapy, NORD, Rare Diseases, continuing medical education, ASGCT

January 14, 2021

TOPIC: Featured News, Medical

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

Posted at January 1, 2021 08:14 am by Valaree DonFrancesco

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 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

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 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

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

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