Rare Disease News

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

Published January 30, 2020 by NORD

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Washington, DC, January 30, 2020—According to the 5th Edition of the “State of the States Report,” released today by the National Organization for Rare Disorders (NORD®) and its Rare Action …

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

Published January 23, 2020 by NORD

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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, …

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

Published January 16, 2020 by NORD

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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 …

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NORD Welcomes Two New Members to Board of Directors

Published December 20, 2019 by NORD

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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 …

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Innovative Data and Analytics Platform to Accelerate Drug Development for Rare Diseases

Published September 19, 2019 by NORD

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Launched by C-Path and NORD through an FDA grant, the goal of the new platform is to accelerate the development of cures by addressing the need to better characterize …

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Mark Your Calendars – October 1 is Rare Cancer Day!

Published August 21, 2019 by NORD

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Washington, DC, August 29, 2019–The National Organization for Rare DisordersⓇ (NORD) has announced a day devoted to raising awareness about rare cancers. Spearheaded by the NORD Rare Cancer Coalition®, which …

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FUNDED BY FDA, C-PATH and NORD TO LAUNCH RARE DISEASE DATA ANALYTICS PLATFORM

Published August 7, 2019 by NORD

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The collaborative project between the organizations will kick off at a launch meeting in September and will aim to reduce barriers for the development of new treatments and cures …

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2019 NORD Rare Summit to Feature Caregivers Who Have Moved from Inspiration to Action

Published July 31, 2019 by NORD

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Washington, DC, July 31, 2019—The National Organization for Rare Disorders (NORD)®, the leading independent nonprofit organization representing the over 25 million Americans with rare diseases, has announced the Patient/Caregiver Opening …

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NORD Launches Digital Education Initiative with PlatformQ Health

Published June 18, 2019 by NORD

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New program by the trusted voice and leader in the rare disease community aims to increase clinician preparedness and improve the care of patients living with rare diseases BOSTON, …

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NORD AND TRIO HEALTH PUBLISH NEW BOOK TO PROVIDE CRITICAL PATIENT INSIGHTS INTO THE BURDEN OF LIVING WITH AND TREATING RARE DISEASES

Published June 3, 2019 by NORD

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This collection of real-world insights is informed by scientifically validated, patient-reported data collected by NORD’s registry community.