Rare Disease News

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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NORD’s State Report Card Shows Progress for Rare Disease Patients, Highlights Remaining Barriers

Published February 7, 2023 by NORD

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Patient access to care and services improved across key policy areas in 2022, but challenges remain for the rare disease community February 7, 2023, Washington, D.C. – The National …

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The Orphan Drug Act turns 40 – and rare disease champions from around the country came to celebrate and show their continued support on Capitol Hill.

Published January 26, 2023 by NORD

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Alone we are Rare. Together we are strong. This motto exemplifies the mindset of the rare disease community and is as true today as it was 40 years ago. The …

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Congress’ Year-End Legislative Package Delivers for the Rare Community

Published December 23, 2022 by NORD

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As part of H.R. 2617, Congress today delivered several crucial programs and reforms that are important to the rare disease community — measures that NORD and the rare community fought …

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Highlights from #NORDSummit Session: Mental Health and Rare Cancers

Published November 21, 2022 by NORD

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One of the most popular sessions at NORD’s 2022 Rare Disease and Orphan Products Breakthrough Summit was the session, “Mental Health and Rare Cancers.” Attendees had the opportunity to gain …

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