Rare Disease News

NORD Announces 2024 Rare Impact Award Honorees, Emmy Award-Winning Journalist, Peter Alexander to Host

Published April 22, 2024 by NORD

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The National Organization for Rare Disorders (NORD) will honor a distinguished group of individuals and industry leaders for their contributions to help improve the lives of more than 30 million …

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National Organization for Rare Disorders (NORD) Releases Annual State Report Card, Revealing Trends in Rare Disease Health Care Coverage

Published March 6, 2024 by NORD

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NORD’s State Report Card grades states on policies that benefit or jeopardize health care coverage, access, and affordability for people living with rare diseases The National Organization for Rare Disorders …

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The Needs of Rare Disease Patients and the Value of Orphan Drugs Will Take Center Stage at this Week’s Rare Disease Congressional Hearing

Published February 28, 2024 by NORD

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By Heidi Ross and Karin Hoelzer What needs to be done to better support rare disease patients, and what is the value of the prescription drugs that treat rare diseases? …

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Guest Blog: Why I Created Zebra Hop

Published January 25, 2024 by NORD

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Jonathan Kowalske, rare disease Dad and co-founder of Milwaukee’s Component Brewing Company, has created a national campaign in partnership with the National Organization for Rare Disorders (NORD) to raise awareness and …

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Presentamos un nuevo informe sobre los latinos y las enfermedades raras

Published December 11, 2023 by NORD

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Read this page in English A lo largo de 2023, NORD organizó una serie de sesiones de escucha comunitaria presenciales y virtuales para pacientes latinos con enfermedades raras y para …

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Introducing a New Report on Latinos and Rare Diseases

Published December 11, 2023 by NORD

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Leer en español Throughout 2023, NORD hosted a series of in-person and virtual community listening sessions for Latino rare disease patients, caregivers, and families in order to gain a better …

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Four actions for faster rare disease diagnosis and improved health equity, a Takeda & NORD report

Published October 16, 2023 by NORD

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Today, Takeda and the National Organization for Rare Disorders (NORD) released a new report that calls for changes to shorten time to diagnosis and improve health equity for all people …

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NORD Launches Education Series to Advance Patient Involvement in Rare Disease Drug Development

Published October 16, 2023 by NORD

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Series available in English and Spanish – Created in partnership with the FDA and Critical Path Institute Today, the National Organization for Rare Disorders (NORD) launched a new education series …

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Statement from NORD CEO on Announcement by Yann Le Cam

Published September 15, 2023 by NORD

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The announcement by our friend and fellow rare advocate Yann Le Cam that he will step down in March 2024 from the role of CEO of EURORDIS provides an opportunity …

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Recognizing Abbey Meyers, NORD Founder and Mother of a Movement

Published May 12, 2023 by NORD

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On this Mother’s Day, NORD would like to recognize the rare disease “Mom” who 40 years ago, brought us all together to where we are today. Abbey Meyers is the …

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