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September 30, 2022

TOPIC: Press Releases, Advocacy

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 30th deadline. Every five years, Congress is tasked… Read More

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

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

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

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