As reported on PharmaBiz, the National Organization for Rare Disorders (NORD) has announced a new request for proposals (RFP) aimed at nonprofit patient advocacy groups interested in launching rare disease registries. These registries will be built on NORD’s IAMRARE platform, which currently hosts more than 45 registries designed to collect patient-reported data.
This initiative is supported through the FDA-funded Rare Disease Cures Accelerator – Data and Analytics Platform (RDCA-DAP), managed in collaboration with the Critical Path Institute. The program seeks to accelerate research and therapy development for rare conditions by providing standardized data infrastructure.
Key Details:
- Eligibility: Applicants must be U.S.-based 501(c)(3) organizations representing a rare disease community. Priority will be given to NORD member organizations.
- Commitment: Selected groups will begin work in April 2026, maintain the registry for at least five years, and contribute data to RDCA-DAP.
- Requirements: A principal investigator, two dedicated staff (minimum 20 hours/week combined), and resources to cover annual maintenance fees (estimated $5,000).
- Support Provided: NORD will host the registry, offer training, and assist with protocol development, IRB processes, survey customization, and advisory board setup.
Application Timeline:
- Opens: November 15, 2025
- Closes: January 10, 2026
- Notifications: February 1, 2026
Founded in 1983, NORD partners with over 350 disease-specific organizations to advance research, care, and policy for the 30 million Americans living with rare diseases.
