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.
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.
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
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.
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.
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.
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.