Rare Disease News

NORD Launches Innovative Natural History Study on Metachromatic Leukodystrophy (MLD)

Published October 1, 2020 by NORD

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Washington, DC, 10/1/2020 — Today, the National Organization for Rare Disorders (NORD®) opened registration for a natural history study on metachromatic leukodystrophy (MLD), a lethal rare disease currently without an FDA–approved treatment. NORD’s Natural History Of MEtachromatic Leukodystrophy (HOME) Study represents an opportunity to address an …

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A Cure In Sight, in partnership with the UCSF Ocular Oncology Center and NORD, Launches Landmark Ocular Melanoma Natural History Study

Published September 28, 2020 by NORD

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Cleveland, OH, September 28, 2020—A Cure in Sight and the National Organization for Rare Disorders have launched an innovative study to research ocular melanoma, a disease that can cause blindness, …

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NORD Joins Coalition Representing Millions of Patients to Release Telehealth Principles

Published September 24, 2020 by NORD

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For Immediate Release Major Groups Representing Millions of Patients Release Telehealth Principles September 24, 2020 – A coalition of organizations representing millions of patients who live with serious, acute, and chronic …

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Rare Cancer Day 2020 To Take Place on September 30

Published September 16, 2020 by NORD

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Washington, DC, September 16, 2020–The National Organization for Rare Disorders (NORD®) has announced the second annual Rare Cancer Day, taking place September 30, 2020. Spearheaded by the NORD Rare Cancer Coalition®, which is composed of 27 rare cancer-specific member organizations, Rare Cancer Day is observed to bring …

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2020 NORD Summit to Feature Leading Experts in Public Policy, Patient Advocacy, Rare Disease Research and Regulatory Science

Published September 10, 2020 by NORD

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Washington, DC, September 10, 2020–At a time when it is vitally important for the rare disease community to come together, the National Organization for Rare Disorders (NORD®) has announced a program of …

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NORD Awards COVID-19 Rapid Response Seed Grants to Rare Disease Patient Organizations Impacted by the Pandemic

Published July 23, 2020 by NORD

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Washington, DC, July 23, 2020—In response to the unprecedented challenges rare disease nonprofit organizations are currently facing, the National Organization for Rare Disorders (NORD®) today announced nineteen seed grant recipients of its COVID-19 Rapid Response Leadership Series program. The awards will assist patient …

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CZI Grants to NORD and EURORDIS Support Organizational Capacity Building and Rare Disease Day Campaigns

Published July 16, 2020 by NORD

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Today, the Chan Zuckerberg Initiative (CZI) announced $1.3 million in funding to support the global rare disease community through two distinct grants to NORD and EURORDIS-Rare Diseases Europe. These grants …

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NORD’s Jayne Holtzer Rare Disease Research Grants Program Continues Its Commitment to Rare Disease Research with New Funding Opportunities

Published June 22, 2020 by NORD

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Washington, DC, June 22, 2020 – The National Organization for Rare Disorders® (NORD), the leading independent nonprofit organization representing over 25 million Americans living with rare diseases, today announced the …

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NORD Supports Rare Disease Nonprofits Impacted by COVID-19 with New Rapid Response Leadership Series

Published May 21, 2020 by NORD

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Washington, DC, May 21, 2020—The National Organization for Rare Disorders (NORD®) today launched the COVID-19 Rapid Response Leadership Series, a program providing resources to support rare disease nonprofit groups in …

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NORD Awards Eleven New Grants in Eight Disease States for Rare Disease Research

Published May 19, 2020 by NORD

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Washington, DC, May 19, 2020—The National Organization for Rare Disorders (NORD®) has announced new awards through its Rare Disease Research Grant Program, which provides funding to qualified researchers for translational …

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