Research Archives - NORD (National Organization for Rare Disorders)

March 4, 2021

TOPIC: Press Releases, Featured News, Research, Industry

New Report Finds Medical Treatments for Rare Diseases Account for Only 11% of US Drug Spending; Nearly 80% of Orphan Products Treat Rare Diseases Exclusively

Posted at March 3, 2021 11:35 am by Jennifer Huron

Washington, DC, March 4, 2021—As US policymakers consider options to address rising health care costs while still meeting the needs of patients, a new report from IQVIA has found that rare diseases account for just 11% of medical invoice spending in the United States, and 79% of all orphan products treat only rare diseases. The report also highlights… Read More

Tags: NORD, FDA, National Organization for Rare Disorders, RareInsights, IQVIA Institute, US Food and Drug Administration, specialty drug spending, biological pathways, Orphan Drugs in the United States: Rare Disease Innovation and Cost Trends Through 2019

February 2, 2021

TOPIC: Featured News, Research, #NORDintheNews

NORD Featured in February 2021 Issue of PharmaVOICE

Posted at February 2, 2021 10:25 am by Laura Mullen

In its February 2021 issue, PharmaVOICE features NORD in its Rare Disease Showcase column. In “Rare Disease: Tackling the Barriers to Rare Disease Treatment,” NORD’s Undiagnosed Patients Registry and the COVID-19 Community Survey Report are referenced. In “The State of Rare Disease, Diagnosis, and Treatment,” the Barriers to Rare Disease Diagnosis, Care and Treatment in the US: A 30-Year… Read More

Tags: covid-19, NORD COVID-19 Community Survey Report, PharmaVOICE, Undiagnosed Patients Registry

January 26, 2021

TOPIC: Press Releases, Featured News, Patients & Members, Research, COVID-19

NORD and Partners Host FDA, CDC Leaders in Webinar Addressing Rare Disease Community on COVID-19 Vaccines

Posted at January 1, 2021 11:00 am by Laura Mullen

Washington, DC, January 26, 2021—In an effort to provide clear, useful, authoritative information to rare disease patients and caregivers on the COVID-19 vaccines, on January 15 the National Organization for Rare Disorders (NORD®), along with The ALS Association, Cystic Fibrosis Foundation and Muscular Dystrophy Association, hosted a special… Read More

Tags: Peter L. Saltonstall, FDA, CDC, US Food and Drug Administration, Dr. Stephen Hahn, covid-19, Cystic Fibrosis Foundation, Muscular Dystrophy Association, PlatformQ Health, Dr. Peter Marks, Dr. Amanda Cohn, Pfizer, Moderna, BioNTech, emergency use authorization, EUA, vaccines, The ALS Association

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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March 4, 2021

New Report Finds Medical Treatments for Rare Diseases Account for Only 11% of US Drug Spending; Nearly 80% of Orphan Products Treat Rare Diseases Exclusively

Posted at March 3, 2021 11:35 am by Jennifer Huron

February 2, 2021

NORD Featured in February 2021 Issue of PharmaVOICE

Posted at February 2, 2021 10:25 am by Laura Mullen

January 26, 2021

NORD and Partners Host FDA, CDC Leaders in Webinar Addressing Rare Disease Community on COVID-19 Vaccines

Posted at January 1, 2021 11:00 am 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

Topics

Alone we are rare. Together we are strong.®