Rare Disease Research | NORD

An important goal of NORD is to address the diagnostic odyssey, to address the lack of standardization of care-management and lack of coordinated multi-disciplinary care… So the overarching goal is to increase knowledge sharing across all rare diseases and across the country to really accelerate the progress in rare diseases with regards to diagnosis treatment and research.
—Olaf Bodamer, MD, PhD, Associate Chief of Genetics and Genomics at Boston Children’s Hospital

How Patients Get Involved

Explore the IAMRARE® Patient Registry

The NORD Patient Registry allows patients and advocacy organizations to share experiences, so researchers better understand how to diagnose and treat rare diseases. Our platform is easy-to-use, allowing patients to own their data, benefit from knowledge gained, generate clinical-grade data, and have a voice in the design and scope of research.

Requests for Proposals

The NORD Jayne Holtzer Rare Disease Research Grants Program provides seed-money grants to qualified investigators for scientific and/or clinical research. The hope is that these studies ultimately will lead to new diagnostics, treatments, and/or cures for rare diseases.

Participate in a Clinical Trial

We share information about opportunities to participate in clinical trials and other studies. Patients can refer to their doctors to see what clinical trials they are eligible for.

NORD is an important resource for me in treating my patients. They proactively provide me with important information as wll as opportunities for clinical trials.

Clinician and Research Support

Resources for Your Patients

NORD provides content in the form of publications and videos to help doctors share information with their patients.

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Find a Rare Disease Centers of Excellence

NORD brings together teams of clinical experts in a nationwide network of cutting-edge facilities, with the goal to provide standards of specialized care and disease management for people living with rare disease and their families

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Continuing Medical Education (CME)

NORD partners with Platform Q to provide accredited online CME courses for healthcare providers. The convenient and interactive online platform offers the ability to reach a large number of learners and fill a critical gap in rare disease education.

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Research Grant and RFP

We provide seed grants for academic scientists to pursue studies related to the development of potential new diagnostics or treatments in order to provide preliminary data and attract funding from government or industry sponsors.

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Clinical Trials and Research Study Recruitment

NORD helps recruit rare disease patients for clinical trials and research studies. We do this by sharing information so patients and their physicians may decide whether specific studies are right for them.

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Data Standards for Rare Diseases

Our approach facilitates tackling rare disease from a public health perspective by working on cross-disease research, in addition to facilitating disease-specific research.

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NORD Publications & Thought Leadership

We reach out to medical professionals through rare disease reports, physician guides and other publications to provide a resource for clinicians to facilitate the timely diagnosis and treatment of rare disease patients.

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Annual Events for Clinicians and Researchers

We bring together the top leaders from the FDA, NIH, patient organizations, industry, payers, and research institutions to address issues of critical importance to the rare disease community.

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