Rare Disease News

Request for Applications: New Patient Registries Available to Join IAMRARE and RDCA-DAP

Published November 18, 2024 by NORD

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The 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 …

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Guest Blog: The Power of the Pack — New Rare Cancer Initiative Hopes Collaboration Will Lead to Cures

Published September 27, 2024 by NORD

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By Susanna Ray It took doctors several years to figure out what was wrong with Karman Kahambwe. And no wonder: the Congolese-American teenager living in Eastern Washington had …

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NORD and Rare Disease Diversity Coalition Release New Survey Findings on Inequities in the Rare Disease Community

Published August 27, 2024 by NORD

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Lea este artículo in español The National Organization for Rare Disorders (NORD) and the Rare Disease Diversity Coalition (RDDC) have unveiled the findings of a groundbreaking national survey aimed at …

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NORD y la Coalición para la Diversidad de Enfermedades Raras publican los resultados de una nueva encuesta sobre las desigualdades en la comunidad de enfermedades raras

Published August 27, 2024 by NORD

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Read this article in English La Organización Nacional de Enfermedades Raras (National Organization for Rare Disorders, NORD) y Rare Disease Diversity Coalition (RDDC) han dado a conocer los hallazgos de …

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RDDC and NORD Announce New Partnership to Help Identify Barriers for Rare Disease Patients and their Caregivers

Published October 13, 2022 by NORD

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New initiative seeks to identify gaps experienced by patients and caregivers in underrepresented communities along their rare disease diagnosis and treatment journey Washington, DC, October 13, 2022— Today, the Rare Disease …

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Rare Disease Workshop Highlights the Importance of Data Sharing in Drug Development

Published September 15, 2022 by NORD

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C-Path, NORD and FDA hosted an annual workshop September 13-14 to spotlight the impact of their innovative data and analytics platform on rare disease drug development TUCSON, Ariz. and WASHINGTON, …

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Head of the Herd: Annie Achee, National Leiomyosarcoma Foundation (NLMSF)

Published August 30, 2022 by NORD

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Annie Achee is the President and Community Education/Research Liaison of the National Leiomyosarcoma Foundation (NLMSF). Leiomyosarcoma is a rare sarcoma (cancer) that originates in smooth tissue (including fat, muscle, nerves, …

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Upcoming Rare Disease Workshop Focuses on the Importance of Data Sharing in Drug Development

Published August 25, 2022 by NORD

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C-Path, NORD and FDA to host annual workshop September 13-14 to highlight the impact of their innovative data and analytics platform on rare disease drug development TUCSON, Ariz. and WASHINGTON, …

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