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

September 21, 2022

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

September 15, 2022

TOPIC: RDCA-DAP, Press Releases

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

August 25, 2022

TOPIC: RDCA-DAP, Press Releases

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

August 18, 2022

TOPIC: Press Releases, Members

NORD Breakthrough Summit 2022: Highly Anticipated Rare Disease Conference Announces Keynote Speakers, Session Topics

Posted at August 8, 2022 09:59 am by Rohan Narayanan

NORD’s annual rare disease conference on October 17 and 18 in Washington, DC will showcase two days of insightful speakers, discussions, and in-person connection

WASHINGTON, DC, August 18, 2022 – The NORD® Rare Diseases & Orphan Products Breakthrough Summit® – the most highly anticipated, global rare disease conference of the year, every year – will be hosted on October 17… Read More

Tags: Washington DC, NORD Summit, Summit, Rare Diseases and Orphan Products Breakthrough Summit, caregiver, Patient, Press, DC, FDA, keynote, NIH, NCATS

August 12, 2022

TOPIC: Press Releases, Featured News, Advocacy

NORD Statement on Passage of the Inflation Reduction Act

Posted at August 8, 2022 05:48 pm by Rohan Narayanan

Washington, DC, August 12, 2022 – Following the passage of the Inflation Reduction Act, Peter L. Saltonstall, President and CEO, the National Organization for Rare Disorders (NORD), issued the following statement:

“The Inflation Reduction Act is a significant step forward in helping ensure that individuals and families with rare diseases have access to the… Read More

Tags: House of Representatives, U.S. House of Representatives, Reconciliation, Inflation Reduction Act, NORD, Advanced Premium Tax Credits, Rare Diseases, Congress, Orphan Drug Act, rare disease, orphan drug tax credit, Senate

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