Rare Disease News

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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National Network of NORD Rare Disease Centers of Excellence Expands to 40 U.S. Medical Institutions

Published May 4, 2023 by NORD

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NORD announced nine new research hospitals have been designated NORD Rare Disease Centers of Excellence, joining a network of thousands of experts committed to sharing knowledge to solve the greatest …

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Maryland Governor Signs Legislation to Address Needs of Rare Disease Patients and Families Throughout the State

Published May 3, 2023 by NORD

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More than Half of U.S. States Now Solicit Input of State Rare Disease Advisory Councils to Inform Local Health Policies May 3, 2023, Annapolis, MD – Today, patients and families in …

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The Celine Effect: Stiff Person Syndrome Gains a Powerful Voice

Published March 15, 2023 by NORD

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By Peter L. Saltonstall and Tara Zier For years, famed singer Céline Dion dealt with mysterious symptoms of severe muscle spasms and stiffening in her limbs that hampered her ability …

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NORD Commemorates Five Years of FDA Listening Sessions

Published March 2, 2023 by NORD

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By Debbie Drell I’ve been a part of thousands of conference calls and virtual meetings during the course of my career. But while the details of many of those conversations …

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New Registry Creates a Platform for Sharing Information About Chondrosarcoma

Published March 1, 2023 by NORD

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Three years ago, Jeffrey Kramer made a promise to his daughter as she bravely battled the rare bone cancer Chondrosarcoma. Today, he is taking an important step in honoring that …

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NORD Announces 2023 Rare Impact Award Honorees and 40th Anniversary Celebration

Published February 27, 2023 by NORD

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May 4 Ceremony in Washington, DC will honor rare disease innovators, advocates, and partners as part of NORD’s 40th Anniversary Celebration Washington, DC, February 27, 2023—National Organization for Rare Disorders …

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