For the last several years, the National Organization for Rare Disorders (NORD) has had the privilege of working in close collaboration with Members of Congress from both sides of the …
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QUINCY, Mass. Dec. 12, 2024 — The National Organization for Rare Disorders (NORD®) has named Tracey Sikora, Vice President of Research & Clinical Programs. “One of the main hurdles in …
Read moreQUINCY, Mass., December 9, 2024 – The National Organization for Rare Disorders (NORD) has named Kelly Esperias, EdD, MBA, CFRE, Chief Strategy & Operations Officer. Esperias, who previously served as …
Read moreOn average, it can take five years – or more – for a rare disease to be correctly diagnosed. For Sharon Drennan and her son Rob, it took 15. “Rob …
Continue reading “A 15-Year Diagnostic Odyssey”
Read moreBy Rebecca Aune, NORD Director of Education Programs The rare disease community knows hard truths all too well. Effective treatments are scarce across the thousands of known rare diseases. With …
Continue reading “Empowering the Rare Disease Community in Drug Development: A New Path Forward “
Read moreIf there is any message that Kate Kelly could share with her fellow rare disease caregivers, it’s this: You’re not alone. “There are moments when you get caught up in …
Continue reading “Rare Disease Caregivers: You’re Not Alone”
Read moreThe National Organization for Rare Disorders (NORD®) announces a request for applications for the implementation of two new patient registries on the IAMRARE® platform. Funding is made available through the …
Read moreSummit highlights, announcements, and insights Patients at the Forefront At the 2024 National Organization for Rare Disorders (NORD) Rare Diseases and Orphan Products Breakthrough Summit®, more than 800 attendees – …
Continue reading “Inspiring Innovation:
A Look Back at the 2024 NORD® Summit”
For 41 years, as a nonpartisan nonprofit organization, the National Organization for Rare Disorders (NORD) has collaborated with administrations and policymakers at every level to address the urgent needs of …
Read moreData will be used to help improve policy, access, resources WASHINGTON, DC, October 21, 2024 – Today, the National Organization for Rare Disorders (NORD) introduced the Living Rare Study, a …
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