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.
The NORD 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.
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 provides content in the form of publications and videos to help doctors share information with their patients.
Learn moreNORD 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
Learn moreNORD 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.
Learn moreWe 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.
Learn moreNORD 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.
Learn moreOur approach facilitates tackling rare disease from a public health perspective by working on cross-disease research, in addition to facilitating disease-specific research.
Learn moreWe 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.
Learn MoreWe 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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Your donation will help more than 30 million Americans with a rare disease navigate their diagnosis, receive financial assistance, and access the care and support they deserve. Make your tax-deductible gift today!