Unlocking Rare Disease Cures: NORD's Data Platform Powers Future AI Innovations

DANBURY, CT – November 14, 2025 – The National Organization for Rare Disorders (NORD) has announced a significant strategic initiative, launching a Request for Proposals (RFP) to empower patient advocacy organizations in establishing two new patient registries. Leveraging its established IAMRARE® data and research platform, this move, backed by funding from the U.S. Food and Drug Administration (FDA) through the Rare Disease Cures Accelerator – Data and Analytics Platform (RDCA-DAP®), underscores a critical enterprise-level commitment to transforming rare disease research through structured data. For C-suite executives, tech decision-makers, and investors, this represents a tangible investment in the data infrastructure essential for future AI-driven therapeutic development and operational efficiency within the healthcare ecosystem.

Catalyzing Research with Strategic Data Investments

NORD's RFP is more than just a call for applications; it's a strategic push to accelerate the understanding and treatment of rare diseases by democratizing access to robust data collection tools. Eligible nonprofit patient advocacy organizations are invited to create and launch patient registries on the IAMRARE platform, with a substantially discounted annual rate of $5,000 for NORD Member Organizations. This financial incentive significantly lowers the barrier to entry for smaller advocacy groups, enabling them to contribute to a larger, standardized data pool.

The funding mechanism, RDCA-DAP, highlights the FDA's proactive role in fostering real-world data (RWD) utilization. Launched in September 2019 as a collaborative agreement with the Critical Path Institute, RDCA-DAP is a direct response to the need for a centralized, standardized infrastructure to accelerate therapy development. While specific total funding figures are not always publicly itemized, the FDA's backing through grants like