NORD Launches New RFP for Patient Registries

Implementation of two new patient registries on the IAMRARE® platform funded by RDCA-DAP®

DANBURY, Conn., Nov. 14, 2025 /PRNewswire/ -- The National Organization for Rare Disorders (NORD®), a leading national nonprofit serving more than 30 million Americans with rare diseases, announces a request for proposals (RFP) from nonprofit patient advocacy organizations for the implementation of two new patient registries on the IAMRARE® data and research 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 (FDA).   

Successful applicants will actively work with NORD, beginning in April 2026, to create and launch a patient registry at a discounted annual rate of $5,000 for NORD Member Organizations (due at signing). NORD will build and host the registry site and will provide training to registry sponsors as they establish a registry advisory board, develop a study protocol, build and customize surveys, engage in an Institutional Review Board (IRB) process, and set criteria for the sharing of data collected by the registry.  

Successful applicants will meet the following criteria:

• 501(c)(3) organization representing a community that meets the criteria for designation as a rare disease
  • Priority consideration will be given to NORD Member Organizations
• Commitment and resources to begin registry work in April 2026 and run a natural history study for a minimum of five years, including:
  • At least two staff members (paid or volunteer) with a combined minimum of 20 hours per week to dedicate to the registry
  • A U.S.-based Principal Investigator (PI)
  • Sufficient financial resources to support annual maintenance fees of approximately $5,000 per year (this cost is estimated and may change based on levels of support)
• Commitment to the submission of data generated by the registry to the RDCA-DAP
• Support from rare disease community and experts who will be able to contribute to the design and success of the project, including selecting disease-specific questions and patient engagement and retention

How to Apply:

The application period opens on Nov. 15, 2025, at 9 a.m. ET, and closes on Jan. 10, 2026, at 11:59 p.m. ET. Accepted applicants will be notified by Feb. 1, 2026, and implementation will begin in April 2026. Apply here: https://forms.cloud.microsoft/r/667mZ6ZaXQ

About IAMRARE ®
The IAMRARE Platform hosts over 45 registries that are sponsored by patient advocacy organizations for the purpose of collecting patient reported data. For more information, visit https://rarediseases.org/iamrare-registry-program/.   

About the National Organization for Rare Disorders
Founded in 1983, the National Organization for Rare Disorders (NORD®) is a leading independent, nonpartisan, nonprofit patient advocacy organization dedicated to improving the health and lives of over 30 million Americans living with rare diseases. In partnership with more than 350 disease-specific member patient organizations, NORD drives progress in rare disease research, care, and policy. Learn more at https://rarediseases.org/.

About RDCA-DAP
RDCA-DAP is an FDA-sponsored initiative that provides a centralized and standardized infrastructure to support and accelerate rare disease characterization with the goal of accelerating therapy development. For information, visit https://c-path.org/programs/rdca-dap/.  

SOURCE National Organization for Rare Disorders (NORD®)