NORD's New Proposal for Patient Registries
National Organization for Rare Disorders (NORD®), a dedicated nonprofit organization supporting over 30 million Americans with rare diseases, is launching an exciting request for proposals (RFP). This initiative aims to create two new patient registries on the IAMRARE® platform, providing an important resource for advocacy organizations working in the rare disease community.
About the IAMRARE® Initiative
The IAMRARE® platform is primarily funded by the Rare Disease Cures Accelerator – Data and Analytics Platform (RDCA-DAP®), a partnership with the Critical Path Institute, which receives backing from the U.S. Food and Drug Administration (FDA). This funding is designed to help create a robust data collection system for the rare disease community.
Partnership Opportunities for Nonprofits
Organizations interested in this opportunity can apply, starting from November 15, to become a part of this vital work. NORD seeks nonprofit patient advocacy groups that are committed to advancing the rare disease agenda through establishing patient registries. These successful applicants will collaborate with NORD starting in April 2026 to implement their projects.
Financial Support and Responsibilities
Selected organizations will benefit from a discounted annual fee of $5,000 for NORD Member Organizations, payable upon signing. NORD will fully support the development and hosting of the registry site, along with training for the registry sponsors. This includes necessary processes for establishing a registry advisory board, designing study protocols, and engaging with Institutional Review Boards (IRBs) to ensure ethical compliance.
Criteria for Successful Applicants
To qualify for this initiative, applicants must meet certain criteria:
- Have 501(c)(3) status representing a community that qualifies as a rare disease. NORD especially encourages applications from its member organizations.
- Demonstrate commitment and resources to initiate registry work by April 2026, including a natural history study lasting at least five years, supported by a dedicated team of at least two members who can allocate a minimum of 20 hours per week.
- Include a U.S.-based Principal Investigator (PI) to oversee the registry project.
- Possess adequate financial means to cover the annual maintenance fees of approximately $5,000, which may vary based on support levels.
- Commit to sharing data generated by the registry with the RDCA-DAP.
- Ensure backing from the rare disease community and experts during the design and execution phases of the project.
Application Details
The application window opens on November 15, 2025, at 9 a.m. ET, closing on January 10, 2026, at 11:59 p.m. ET. Notification of acceptance will be sent by February 1, 2026, setting the stage for implementation in April 2026.
Exploring IAMRARE®
The IAMRARE® platform plays a crucial role in hosting over 45 registries managed by patient advocacy organizations, primarily focused on collecting essential patient-reported data. This initiative not only helps in better understanding rare diseases but also supports patient engagement in treatment protocols.
About NORD®
Established in 1983, the National Organization for Rare Disorders (NORD®) is integral to improving the lives of millions facing rare diseases. Collaborating with over 350 disease-specific organizations, NORD advances research, care, and policymaking in the rare disease sector.
About RDCA-DAP
RDCA-DAP is an initiative sponsored by the FDA that provides critical infrastructure to accelerate the characterization of rare diseases, ultimately promoting therapeutic development. This program exemplifies the commitment to understanding and treating rare conditions effectively.
Frequently Asked Questions
What is the purpose of the NORD's RFP?
The RFP aims to invite nonprofit patient advocacy organizations to propose the development of patient registries for rare diseases.
Who can apply for the funding?
501(c)(3) organizations representing communities that meet rare disease criteria are eligible to apply, with priority given to NORD member organizations.
What does the application process involve?
The application period is open from November 15, 2025, to January 10, 2026, with accepted applicants notified by February 1, 2026.
What support will NORD provide?
NORD will build and host the registry site and provide necessary training to help establish the registry and advisory board.
What are the financial requirements for applicants?
Applicants should be able to cover annual fees of approximately $5,000 and demonstrate adequate resources for the registry project.
