Rare Disease News

NORD Announces Four Patient Organizations to Join the IAMRARE Community and Submit Data to RDCA-DAP

Published March 28, 2023 by NORD

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The Rare Disease Cures Accelerator–Data and Analytics Platform (RDCA-DAP®) is an integrated database and analytics hub developed by Critical Path Institute (C-Path) and NORD through a collaborative grant from the …

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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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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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NORD Opens Applications for Three New Rare Disease Research Grants

Published September 21, 2022 by NORD

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Since 1989, NORD has awarded over 200 grants totaling over $9 million in approved funding September 21, 2022, Washington, DC – Today, the National Organization for Rare Disorders (NORD®) announced …

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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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NORD Announces over $100,000 in Grant Funding Available for Rare Disease Research

Published April 29, 2022 by NORD

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Three RFPs Now Open for Qualified Researchers through NORD’s Jayne Holtzer Rare Disease Research Grants Program April 29, 2022, Washington, DC – Today, the National Organization for Rare Disorders (NORD®) …

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Helping Rare Disease Patients: A Conversation with Dr. Neilan about the Rare Disease Centers of Excellence Program

Published December 20, 2021 by NORD

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In November, NORD announced the launch of its Rare Disease Centers of Excellence program, which aims to improve medical care for people living with rare diseases. The program has ambitious …

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The Importance of Patient Voices and Data Analytics

Published December 17, 2021 by NORD

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NORD, in partnership with the Critical Path Institute (C-Path) is proud to announce a two-part video series on patient-focused drug development (PFDD) as part of our Rare Disease Cures Accelerator-Data …

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Head of the Herd: Mark Laabs, Rare Cancer Research Foundation (RCRF)

Published December 6, 2021 by NORD

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Mark Laabs is the Founder and Chairman of the Rare Cancer Research Foundation (RCRF). He shares a passion for driving research infrastructure with diversity, equity, and inclusion for rare cancer …

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The Gorlin Syndrome Alliance and NORD Launch Natural History Study for Gorlin Syndrome

Published November 18, 2021 by NORD

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Reading, PA, November 18, 2021—Today, the Gorlin Syndrome Alliance (GSA) and the National Organization for Rare Disorders (NORD)® launched the largest-ever study to research Gorlin syndrome, a rare disease that …

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