Press Releases Archives - Page 2 of 27 - NORD (National Organization for Rare Disorders)

January 28, 2021

TOPIC: Press Releases, Featured News, Patients & Members, Advocacy, Rare Disease Day

How Will You Show Your Stripes in 30 Days? Join NORD in Spreading Awareness for Rare Disease Day®, February 28

Posted at January 1, 2021 12:13 pm by Valaree DonFrancesco

Washington, DC, January 28, 2021— Even with the world acutely aware of public health matters in light of the COVID-19 pandemic, there are millions in the United States and around the globe living with rare diseases and accompanying life-altering issues that are largely unknown to the general public. RRead More

Tags: Rare Disease Day, NORD, Peter L. Saltonstall, RAN, Rare Action Network, Cystic Fibrosis, National Organization for Rare Disorders, Show Your Stripes, covid-19, EURORDIS-Rare Diseases Europe, The Balancing Act, Lifetime Television, Behind the Mystery, Lisa Sarfaty, William Yank, Kelly Barendt, Travis Flores, Friedreich's ataxia, leukemia, RocketPharma

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 at January 1, 2021 09:25 am by Valaree DonFrancesco

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 at January 1, 2021 11:00 am by Valaree DonFrancesco

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

November 19, 2020

TOPIC: Press Releases, Featured News, Research

NORD Releases Report on the State of Rare Disease Diagnosis, Care and Treatment in America Over Three Decades

Posted at November 11, 2020 09:13 am by Valaree DonFrancesco

Washington, DC—November 19, 2020: Today, the National Organization for Rare Disorders (NORD®) published a comprehensive report through its RareInsights™ initiative: Barriers to Rare Disease Diagnosis, Care, and Treatment in the US: A 30-year Comparative Analysis. As part of an ongoing mission to generate evidence and data to advanceRead More

Tags: NORD, National Organization for Rare Disorders, Vanessa Boulanger, RareInsights, National Commission on Orphan Diseases, Director of Research, Barriers to Rare Disease Diagnosis, Care, and Treatment in the US: A 30-year Comparative Analysis

November 18, 2020

TOPIC: Press Releases, Featured News, Advocacy, RDACs

NORD Launches Project RDAC, Announces Inaugural Meeting on December 16

Posted at November 11, 2020 09:15 am by Valaree DonFrancesco

Washington, DC, November 18, 2020—With a mission of empowering and equipping the rare disease community to effectively engage decision-makers within their state governments, the National Organization for Rare Disorders (NORD®) has launched an initiative that will assist in building well-organized, high-functioning Rare Disease Advisory Councils (RDACs)… Read More

Tags: Rare Disease Advisory Council, Rachel Sher, Horizon Therapeutics, RDAC, Vice President, Policy and Regulatory Affairs for NORD