Rare Disease News

NORD Featured in February 2021 Issue of PharmaVOICE

Published February 2, 2021 by NORD

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In its February 2021 issue, PharmaVOICE features NORD in its Rare Disease Showcase column. In “Rare Disease: Tackling the Barriers to Rare Disease Treatment,” NORD’s Undiagnosed Patients Registry and the …

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

Published January 28, 2021 by NORD

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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 …

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

Published January 27, 2021 by NORD

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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 …

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

Published January 26, 2021 by NORD

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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 …

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

Published January 22, 2021 by NORD

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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. Woodcock has consistently demonstrated …

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

Published January 14, 2021 by NORD

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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. …

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The End of Surprise Medical Billing: NORD Applauds Bipartisan Progress to Protect Millions of Rare Disease Patients from Unexpected and Financially Crippling Medical Expenses

Published December 22, 2020 by NORD

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After more than a year of negotiations in Congress and advocacy from NORD and patient coalition partners, lawmakers on Capitol Hill have passed legislation to protect patients from surprise medical …

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STAT Features NORD in Article on the Continued Threat PPE Shortages Pose to Some Rare Disease Patients

Published December 17, 2020 by NORD

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In a 12.16.2020 article from STAT on how shortages of protective gear pose a continued threat to some rare disease patients, NORD’s COVID-19 Community Survey Report is highlighted and NE …

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NORD Students for Rare Member Provides Her Perspective on “Unlocking the Power of Health Care Data” Summit Panel

Published December 16, 2020 by NORD

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As a 2020 scholarship recipient, I was able to attend the NORD Rare Diseases and Orphan Products and Breakthrough Summit in October and to hear from inspiring patients, hard-working medical …

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In Final Installment of Video Series, Patient Advocacy Group Leaders Share Thoughts on the Importance of Participation in RDCA-DAP

Published December 16, 2020 by NORD

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The Rare Disease Cures Accelerator-Data and Analytics Platform (RDCA-DAP) initiative will allow patient organizations to leverage the data they have collected to accelerate understanding of disease progression, clinical outcome measures and biomarkers …

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