#USA #Rare Diseases #Danbury #NORD #IAMRARE

NORD Unveils New Request for Proposals for Patient Registries

The National Organization for Rare Disorders (NORD®), a prominent nonprofit organization dedicated to supporting the over 30 million Americans living with rare diseases, has launched a new request for proposals (RFP). This initiative is specifically aimed at nonprofit patient advocacy organizations interested in developing two new patient registries on the IAMRARE® platform. This significant move comes with funding from the Rare Disease Cures Accelerator – Data and Analytics Platform (RDCA-DAP®), established in collaboration with the Critical Path Institute and supported by the U.S. Food and Drug Administration (FDA).

Overview of the Initiative

Starting in April 2026, NORD will work closely with selected applicants to create and launch patient registries tailored to specific rare diseases. Successful applicants will be able to utilize the IAMRARE data and research platform for a discounted annual fee of $5,000, which is considerably lower than typical costs for registry implementation.

NORD's role in this process will be comprehensive; they will not only build and host the registry sites but also offer essential training to registry sponsors. This training will encompass the establishment of advisory boards, the development of study protocols, crafting and personalizing surveys, and navigating the necessary Institutional Review Board (IRB) processes. Moreover, registry sponsors will set vital criteria for data sharing that will enhance research and support efforts.

Eligibility Criteria for Applicants

To be eligible for this unique opportunity, applicants must meet several critical requirements:

• - They must be 501(c)(3) organizations representing communities that qualify as having rare diseases.
• - Priority will be given to NORD Member Organizations.
• - Applicants must demonstrate a commitment and possess the necessary resources to commence registry activities by April 2026 and maintain a natural history study for at least five years.
• - Each applicant should allocate at least two staff members, whether paid or volunteers, capable of dedicating a combined minimum of 20 hours each week to the registry.
• - Additionally, a U.S.-based Principal Investigator (PI) must be designated to oversee the project, ensuring compliance and effective management.
• - Financial resources should be sufficient to cover annual maintenance fees, projected at approximately $5,000, although these costs may vary based on available support.
• - Lastly, a commitment to submitting the data gathered from the registries to the RDCA-DAP and having the endorsement of the rare disease community are essential.

Application Details

The application process will open on November 15, 2025, at 9 a.m. ET, and will close on January 10, 2026, at 11:59 p.m. ET. Applicants will be notified of their acceptance by February 1, 2026, and subsequent implementation will commence in April 2026. Interested organizations can apply through the designated link provided in the official announcement.

Role of IAMRARE®

The IAMRARE platform already hosts over 45 registries sponsored by various patient advocacy organizations, focused on collecting essential patient-reported data. This platform serves as a critical tool in advancing rare disease research and improving overall patient care. More information about the IAMRARE registry program can be found on the NORD website.

About NORD®

Founded in 1983, the National Organization for Rare Disorders is a key independent and nonpartisan nonprofit advocating for those living with rare diseases. By collaborating with over 350 disease-specific member organizations, NORD aims to foster progress in research, enhance patient care, and influence policy that affects rare disease communities. The organization promotes a unified approach to address the complex challenges faced by patients.

In summary, the launch of this RFP by NORD signifies an essential step towards enhancing patient service infrastructure and data collection in the rare disease realm, driving forward-thinking initiatives that could lead to significant advancements in research and treatment.