News - NORD (National Organization for Rare Disorders)

January 27, 2021

TOPIC: Press Releases, Featured News, Advocacy, State Report Card, Medicaid

NORD State Report Card Grades States on Policy Issues Critical to Rare Disease Patients

Posted by Laura Mullen

Washington, DC, January 27, 2021—Today, the National Organization for Rare Disorders (NORD®) and its Rare Action Network (RAN™) published the 6th Edition of the State Report Card, the annual report rating each state and Washington, DC on the most important issues directly affecting more than 25 million AmericanRead More

Tags: Peter L. Saltonstall, Medicaid, Rare Action Network, newborn screening, Out-of-pocket costs, Rare Disease Advisory Council, step therapy, State Report Carfd

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 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

January 25, 2021

TOPIC: Uncategorized

NORD’s Rare Caregiver Respite Program Featured in BioNews Service Newsletters

Posted by Laura Mullen

On January 22, NORD’s Rare Caregiver Respite Program was featured in an article by BioNews Service writer Mary Chapman detailing the program’s offerings. It has run in the following patient-focused newsletters to date:

Pulmonary Fibrosis News (reach: 90k readers)
Cystic Fibrosis News (reach: 50k readers)
Cushing’s Disease News (reach: 13k readers)

The article can be read in its entirety Read More

January 22, 2021

TOPIC: Featured News

Statement from NORD on Dr. Janet Woodcock, Acting Commissioner of the US Food and Drug Administration (FDA)

Posted by Laura Mullen

The National Organization for Rare Disorders (NORD®) looks forward to working with Dr. Janet Woodcock as Acting Commissioner of the US Food and Drug Administration (FDA). Dr…. Read More

Tags: FDA, orphan drugs, Dr. Janet Woodcock, US Food and Drug Administration, covid-19, President Biden, Acting Commissioner

January 14, 2021

TOPIC: Featured News, Medical

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

Posted 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

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January 27, 2021

NORD State Report Card Grades States on Policy Issues Critical to Rare Disease Patients

Posted by Laura Mullen

January 26, 2021

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

Posted by Laura Mullen

January 25, 2021

NORD’s Rare Caregiver Respite Program Featured in BioNews Service Newsletters

Posted by Laura Mullen

January 22, 2021

Statement from NORD on Dr. Janet Woodcock, Acting Commissioner of the US Food and Drug Administration (FDA)

Posted by Laura Mullen

January 14, 2021

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

Posted by Laura Mullen

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Alone we are rare. Together we are strong.®