Press Releases Archives - NORD (National Organization for Rare Disorders)

February 11, 2020

TOPIC: Events, Featured News, Press Releases

NORD Introduces This Year’s Rare Disease-Fighting Super Group: The 2020 Rare Impact Award Honorees!

Posted at February 2, 2020 10:17 am by Laura Mullen

Washington, DC, February 11, 2020—The National Organization for Rare Disorders (NORD®) has announced this year’s roster of rare disease change-makers, the 2020 Rare Impact Award honorees. These exceptional individuals, organizations and industry innovators will be honored for their outstanding work for the rare disease community on May 15, 2020, in Cleveland, Ohio. The 2020 Rare Impact Awards program will… Read More

Tags: 2018 Rare Impact Award Honoree, alnylam pharmaceuticals, Amgen, AveXis, Believe Limited, BioMarin Pharmaceutical, bluebird bio, Boston Children's Hospital, CdLS, CdLS Foundation, Center for Drug Evaluation and Research, Charlene York, Clinic for Special Children, Cornelia de Lange Syndrome Foundation, Daiichi-Sankyo, Erica Barnes, FDA, GBT, Genetech, Givlaari, GlaxoSmithKline, Global Blood Therapeutics, Horizon Therapeutics, Janet Woodcock, Julia Vitarello, MD, Mila’s Miracle Foundation, Norman Winnerman, Oxbryta, Peter Frampton, Principia Biopharma, randi clites, Rare Action Network, rare cancer coalition, Rozlytrek, sherrod brown, Timothy Yu, Trikafta, Turalio, Vertex Pharmaceuticals, Zolgensma

January 30, 2020

TOPIC: Advocacy, Featured News, Press Releases

NORD State of the States Report Shows Key Policy Improvements Were Achieved by States in 2019, But More Progress Is Needed to Support Americans Living with Rare Diseases

Posted at January 1, 2020 02:16 pm by Laura Mullen

Washington, DC, January 30, 2020—According to the 5^th Edition of the “State of the States Report,” released today by the National Organization for Rare Disorders (NORD®) and its Rare Action Network (RAN™), while many US states took powerful steps forward in 2019, there is major work yet to be done on a number of policy issues critical to over… Read More

Tags: insurance market protections, Medicaid section 1115 waivers, Medicaid/CHIP eligibility, National Organization for Rare Disorders, newborn screening, NORD, Peter L. Saltonstall, Prescription drug out-of-pocket cost protections, Rare Action Network, Rare disease advisory councils, step therapy

January 23, 2020

TOPIC: Featured News, Medical, Patients & Members, Press Releases, Research

NORD Joins with Pyruvate Kinase Deficiency Community to Publish Historic “Voice of the Patient” Report

Posted at January 1, 2020 02:29 pm by Laura Mullen

Washington, DC, January 23, 2020–The National Organization for Rare Disorders (NORD)®, the Foundation for Rare Blood Diseases (SZB) and the pyruvate kinase deficiency community together made history on September 20, 2019 with patients and families sharing their experiences directly with the US Food and Drug Administration (FDA) and other key stakeholders, and first-of-its-kind testimony from the heavily impacted Amish… Read More

Tags: FDA, Foundation for Rare Blood Diseases, NORD, Peter L. Saltonstall, Pyruvate Kinase Deficiency, SZB, U.S. Food and Drug Administration, Voice of the Patient

January 16, 2020

TOPIC: Advocacy, Featured News, Press Releases, Rare Disease Day

NORD Issues a Rare Decree: Show Your Stripes™ for Rare Disease Day®!

Posted at January 1, 2020 10:21 am by Laura Mullen

Washington, DC, January 16, 2020–The National Organization for Rare Disorders (NORD®), the leading independent nonprofit organization representing over 25 million Americans living with rare diseases, is issuing a Rare Disease Day decree: Show Your Stripes! This campaign takes its cue from the majestic zebra, known for its distinctive stripes. NORD is imploring the world at large to show… Read More

Tags: Council of National Alliances, eurordis, Peter L. Saltonstall, Rare Disease Day, Show Your Stripes

December 20, 2019

TOPIC: Featured News, Press Releases

NORD Welcomes Two New Members to Board of Directors

Posted at December 12, 2019 09:33 am by Laura Mullen

Washington, DC, December 20, 2019—The National Organization for Rare Disorders (NORD)®, the leading independent nonprofit organization representing over 25 million Americans with rare diseases, announces the appointment of two new members to its Board of Directors, effective immediately.

Joining the Board of Directors are Susan A. Berry, MD and Shafali Spurling Jeste,… Read More

Tags: David Geffen School of Medicine at UCLA, inherited metabolic disorders, MD, neurodevelopmental disorders, NORD Board of Directors, Rice University, Shafali Spurling Jeste, Susan A. Berry, University of Minnesota

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