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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 30, 2022

TOPIC: Head of the Herd, Voices of Rare Cancer, Rare Cancer Coalition, Members, Research

Head of the Herd: Annie Achee, National Leiomyosarcoma Foundation (NLMSF)

Posted at August 8, 2022 08:29 am by Rohan Narayanan

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, tendons, and blood and lymph vessels) and can occur anywhere in the body. For more information, see the NORD Rare Disease… 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