Featured News 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

December 22, 2020

TOPIC: Featured News, Patients & Members, Advocacy, RareInsights

The End of Surprise Medical Billing: NORD Applauds Bipartisan Progress to Protect Millions of Rare Disease Patients from Unexpected and Financially Crippling Medical Expenses

Posted at December 12, 2020 03:33 pm by Rose Gallagher

After more than a year of negotiations in Congress and advocacy from NORD and patient coalition partners, lawmakers on Capitol Hill have passed legislation to protect patients from surprise medical billing. This is a major win for rare disease patients and their families that will help protect them from unexpected medical bills. The provisions to end surprise medical… Read More

Tags: Congress, rare disease patients, Capitol Hill, covid-19, surprise medical bills, balance bill, federally regulated insurance, state-regulated health insurance, federal legislation

December 17, 2020

TOPIC: Featured News, Patients & Members, Advocacy, #NORDintheNews

STAT Features NORD in Article on the Continued Threat PPE Shortages Pose to Some Rare Disease Patients

Posted at December 12, 2020 01:09 pm by Laura Mullen

In a 12.16.2020 article from STAT on how shortages of protective gear pose a continued threat to some rare disease patients, NORD’s COVID-19 Community Survey Report is highlighted and NE Rare Action Network’s Aimee Guarnieri and NY Rare Action Network’s Mary Wooten are interviewed. Also interviewed in the piece is Lauren Ruotolo, president of the Read More

Tags: Rare Action Network, NORD COVID-19 Community Survey Report, Aimee Guarnieri, Mary Wooten, Lauren Ruotolo, FD/MAS Alliance, PPE

December 16, 2020

TOPIC: Featured News, Research, Industry, Students for Rare

NORD Students for Rare Member Provides Her Perspective on “Unlocking the Power of Health Care Data” Summit Panel

Posted at December 12, 2020 08:38 am by Jennifer Ryan

As a 2020 scholarship recipient, I was able to attend the NORD Rare Diseases and Orphan Products and Breakthrough Summit in October and to hear from inspiring patients, hard-working medical professionals and research experts. Specifically, I was very drawn to the “Unlocking the Power of Health Care Data” panel, which discussed how data-driven health care is being used… Read More

Tags: NORD Summit, Rare Diseases and Orphan Products Breakthrough Summit, Mitochondrial Disease, Rare Disease Cures Accelerator Data and Analytics Platform, RDCA-DAP, Eversana, Critical Path Institute, Jane Larkindale, Kira Mann, MitoAction Mobile

December 16, 2020

TOPIC: Featured News, Patients & Members, Research, Advocacy, RDCA-DAP

In Final Installment of Video Series, Patient Advocacy Group Leaders Share Thoughts on the Importance of Participation in RDCA-DAP

Posted at December 12, 2020 08:31 am by Laura Mullen

The Rare Disease Cures Accelerator-Data and Analytics Platform (RDCA-DAP) initiative will allow patient organizations to leverage the data they have collected to accelerate understanding of disease progression, clinical outcome measures and biomarkers for rare diseases. It will increase the efficiency of data analysis, and hopefully expedite treatments for rare diseases individually and for Read More

Tags: NORD, VHL Alliance, rare disease treatments, National Organization for Rare Disorders, patient advocacy, Foundation for Prader-Willi Research, Congenital Hyperinsulinism International, Rare Disease Cures Accelerator Data and Analytics Platform, RDCA-DAP, C-Path, Critical Path Institute

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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

December 22, 2020

The End of Surprise Medical Billing: NORD Applauds Bipartisan Progress to Protect Millions of Rare Disease Patients from Unexpected and Financially Crippling Medical Expenses

Posted at December 12, 2020 03:33 pm by Rose Gallagher

December 17, 2020

STAT Features NORD in Article on the Continued Threat PPE Shortages Pose to Some Rare Disease Patients

Posted at December 12, 2020 01:09 pm by Laura Mullen

December 16, 2020

NORD Students for Rare Member Provides Her Perspective on “Unlocking the Power of Health Care Data” Summit Panel

Posted at December 12, 2020 08:38 am by Jennifer Ryan

December 16, 2020

In Final Installment of Video Series, Patient Advocacy Group Leaders Share Thoughts on the Importance of Participation in RDCA-DAP

Posted at December 12, 2020 08:31 am by Laura Mullen

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Alone we are rare. Together we are strong.®