Press Releases Archives - NORD (National Organization for Rare Disorders)

September 30, 2022

NORD Statement on User Fee Reauthorization and Continuing Resolution

Posted at September 9, 2022 01:06 pm by Rohan Narayanan

September 30, 2022, Washington, DC – Following the passage of H.R 6833, Peter L. Saltonstall, President and CEO of the National Organization for Rare Disorders (NORD), issued the following statement:

“NORD is pleased that Congress approved a full five-year reauthorization of several critical FDA user fee programs prior to the September 30^th deadline. Every five years, Congress is tasked… Read More

Tags: federal government, CR, user fee, Congress, user fee package, FDA, Senate, House, US Food and Drug Administration, user fee reauthorization, UFA, Continuing Resolution

September 28, 2022

TOPIC: Press Releases, Voices of Rare Cancer

Rare Cancer Day 2022 Showcases Critical Community Awareness and Advocacy

Posted at September 9, 2022 08:30 am by Rohan Narayanan

Washington, DC, September 28, 2022— This week, the rare disease community will celebrate the fourth annual Rare Cancer Day. Spearheaded by the National Organization for Rare Disorders (NORD®) Rare Cancer Coalition™, Rare Cancer Day is observed on September 30 to highlight the challenges patients with rare cancers face and to unify individuals living with rare cancers for… Read More

Tags: awareness, TargetCancer Foundation, rare cancer, Fibrolamellar Cancer Foundation, rare cancer day, rare cancer coalition, Rare Cancer Day 2022, September 30

September 21, 2022

TOPIC: Research, Press Releases

NORD Opens Applications for Three New Rare Disease Research Grants

Posted at September 9, 2022 08:06 am by Rohan Narayanan

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 new requests for proposal (RFP) for grant funding through NORD’s Jayne Holtzer Rare Disease Research Grants Program. NORD provides grants for the study of diseases for… Read More

Tags: Jayne Holtzer Rare Disease Research Grants Program, FDA, research, treatment, grants, Levy-Yeboa Syndrome, Autoimmune Polyglandular Syndrome Type 1, APS-1, LYS, Megacystis Microcolon Intestinal Hypoperistalsis Syndrome, MMIHS

September 15, 2022

TOPIC: Press Releases, RDCA-DAP

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

Posted at September 9, 2022 12:10 pm by Rohan Narayanan

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, DC, September 15, 2022 — The Rare Disease Cures Accelerator-Data and Analytics Platform initiative (RDCA-DAP®) hosted an all-day workshop and annual meeting September 13… Read More

Tags: FDA, NIH, Rare Disease Cures Accelerator Data and Analytics Platform, RDCA-DAP, C-Path, Critical Path

August 25, 2022

TOPIC: Press Releases, RDCA-DAP

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

Posted at August 8, 2022 08:45 am by Rohan Narayanan

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, DC, August 25, 2022 — The Rare Disease Cures Accelerator-Data and Analytics Platform initiative (RDCA-DAP®) will host its in-person annual workshop on September 13 and 14 at… Read More

Tags: Data, FDA, CDER, research, Data-Sharing, Rare Disease Cures Accelerator Data and Analytics Platform, RDCA-DAP, workshop, Critical Path Institute

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