Published March 1, 2023 by NORD
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 …
Continue reading “New Registry Creates a Platform for Sharing Information About Chondrosarcoma”
Read morePublished September 21, 2022 by NORD
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 …
Continue reading “NORD Opens Applications for Three New Rare Disease Research Grants”
Read morePublished August 30, 2022 by NORD
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, …
Continue reading “Head of the Herd: Annie Achee, National Leiomyosarcoma Foundation (NLMSF)”
Read morePublished April 29, 2022 by NORD
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®) …
Continue reading “NORD Announces over $100,000 in Grant Funding Available for Rare Disease Research”
Read morePublished December 20, 2021 by NORD
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 …
Read morePublished December 17, 2021 by NORD
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 …
Continue reading “The Importance of Patient Voices and Data Analytics”
Read morePublished December 6, 2021 by NORD
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 …
Continue reading “Head of the Herd: Mark Laabs, Rare Cancer Research Foundation (RCRF)”
Read morePublished November 18, 2021 by NORD
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 …
Read morePublished October 27, 2021 by NORD
October 27, 2021 – The National Institutes of Health, U.S. Food and Drug Administration, 10 pharmaceutical companies and five non-profit organizations have partnered to accelerate development of gene therapies for …
Read morePublished October 5, 2021 by NORD
This Request for Proposal (RFP) is for the creation of a logo and branding guidelines for the Rare Disease Cures Accelerator-Data and Analytics Platform (RDCA-DAP®), a project led by Critical …
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