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November 18, 2022

TOPIC: Research, RDCA-DAP, Registries

Request for Applications: New Patient Registries

Posted at November 11, 2022 03:56 pm by Rohan Narayanan

The National Organization for Rare Disorders (NORD) announces a request for applications for the implementation of up to four new patient registries on the IAMRARE platform. Funding is made available through the Rare Disease Cures Accelerator – Data and Analytics Platform (RDCA-DAP®), a collaborative agreement with the Critical Path Institute funded by the U.S. Food and Drug Administration.

The… Read More

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

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

July 7, 2022

TOPIC: RDCA-DAP, Get Involved

A Conversation on Drug Development for Rare Diseases

Posted at July 7, 2022 09:58 am by Mary Dunkle

Explore the five steps in drug development and discover new opportunities to get involved

More than 95% of rare disease patients lack an FDA-approved treatment for their condition. However, today there are more opportunities than ever before for patients, caregivers and patient organizations to play a key role in advancing R&D on rare diseases. This webinar will explore the basics… Read More

December 17, 2021

TOPIC: Research, RDCA-DAP

The Importance of Patient Voices and Data Analytics

Posted at December 12, 2021 09:00 am by Maia Craig

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 and Analytics Platform (RDCA-DAP) initiative.  

The first video, What is Patient-Focused Drug Development (PFDD)?, provides a brief explanation of what patient-focused drug development is and how the patient voice is incorporated into… Read More