IAMRARE® Program Powered by NORD®

Rare Disease
Research, Redefined.

Powered by NORD, the IAMRARE Program is advancing better health outcomes and meaningful patient relationships in the study of rare disease. With 4 decades of experience in patient advocacy, along with input from doctors, researchers, and the US Food & Drug Administration, NORD has created IAMRARE to facilitate patient-powered natural history studies. Deep patient engagement and improved health outcomes are shaping rare disease research and treatments. And your involvement makes a difference.

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Are you a patient or caregiver ready to join the IAMRARE Program? Click here to find a study.

Why Choose IAMRARE?

Founded by rare disease patient advocates 40 years ago, NORD remains passionate and driven to foster innovative paths to better health. Deeply trusted, NORD brings experts and clinical insights together to accelerate the pace of research for rare conditions. Patients are empowered as partners throughout the process – from study initiation, to co-design, to implementation, to data ownership. By harnessing the power of data and patient-reported experiences, IAMRARE studies are informing clinical trials, new treatment methods, and transformative change for the rare disease community.

Statistics featured below are as of Jan 1, 2022

In Partnership with Patients

The most impactful clinical research fosters patient empowerment and privacy as top priorities. The IAMRARE Program facilitates patient engagement and researchers’ adherence to data standards. The ultimate goal of IAMRARE is to unite patients and research communities in an inclusive, informed path to better health.


With 40 years of community trust, NORD’s primary commitment is to protecting and respecting individuals and their data.


Shaping medical research and translational science for improved health outcomes for rare disease patients.


Working together for the rare disease community, with patients at the center.


Ensuring valid studies are producing impactful actionable results.

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patient-powered natural history studies

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Enrolled patient, clinician, researcher, and advocacy organization participants

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Diseases represented


peer-reviewed publications

The IAMRARE® Experience

By harnessing the power of data and patient-reported experiences, IAMRARE research is uncovering critical details to inform clinical trial design and the testing of new treatment methods.

Easy to Use

This mobile-friendly, secure, cloud-based platform creates a simple experience for study sponsors and participants.


Patient advocacy groups have ownership and control over their data.

Tools for Viewing Data

Study sponsors and participants can access real-time data and related trends.


Study sponsors can create customizable registries and benefit from our library of standardized measures.

Support, Mentorship & Training

NORD has developed and provides guidance, tools, templates, and other resources to help organizations reduce complexity and navigate best practices in launching a study.

Peer Network

Join Patient Advocacy Groups and researchers working together and learning from each other.

FD/MAS Alliance

Because the FD/MAS community owns this registry, we have the agency to advance the science of our disease. We truly believe that treatment and even a cure are possible. The registry is one way we can put our beliefs to action and work for that future on our terms
Tovah Burstein, Community Engagement Director

Foundation for Prader Willi Research

The NORD IAMRARE registry program has supported our research programs across the board. Through the Registry, we have validated patient-centric clinical outcome assessments that can be used in clinical trials.
Theresa Strong

National PKU Alliance

Over the last 5 years, the Registry has quickly grown into one of our organization’s biggest assets. [It] has allowed our community to drive efforts that prioritize the patient voice, advance research, and facilitate patient-centric research studies and medical care.
Lauren Youngborg, Director

Platelet Disorder Support Association (PDSA)

Our IAMRARE registry currently contains seven surveys and 2,000 registered users and became the anchor of PDSA’s research program… We are very grateful to NORD for giving us a platform to incorporate the patient voice in ITP research.
Caroline Kruse, President and CEO

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Submit the form below and a NORD representative will contact you with next steps.

IAMRARE Program Resources

Registry Platform FAQs

Have a question about how to get started with IAMRARE, on data storage or types, the cost to participate, or defining key terms? We’re here to help! Explore our frequently asked questions. If you don’t see your question, send a note to [email protected]

Learn More

What is a Patient Registry

A registry is a tool for helping research! Watch a 90 second introductory video from NORD and Critical Path Institute about the collection of standardized information in a registry, the value and variety of registries, and why it’s important for individuals and patient organizations to participate.

Watch Video