A Patient-Centered Approach to
Research and Treatment
We support clinicians and researchers so they can advance research and treatment that will enable
people living with rare diseases to live healthier and fuller lives
We support clinicians and researchers so they can advance research and treatment that will enable
people living with rare diseases to live healthier and fuller lives
Our extensive rare disease reports and video resources can help your patients better understand a new diagnosis or navigate living with their rare disease.
Learn moreWe partner to provide healthcare professionalswith accredited online CME courses on rare diseases.
Learn moreNORD designates and partners with Rare Disease Centers of Excellenceto improve collaboration and the delivery of care for rare diseases patients.
Learn moreWith the support of our donors, we are able to offer seed grants to researchers working in rare diseases. This funding helps in the collection of preliminary data needed to attract future grants and research contracts.
Learn moreThrough our IAMRARE Registry Program, we partner with patient and research communities to collect clinical-grade patient-reported outcomes data.
Learn moreWe are partnering on key initiatives to help advance the collection of real-world and patient-reported data, and to advance data standards and interoperability.
Learn moreWe’re asking for your help so people with rare diseases can live better and fuller lives. Join our network of medical professional and academic volunteers and learn about opportunities to lend your expertise.
Learn more
We bring people living with rare diseases and their families together around the country to provide education and connections with the support of medical professionals.
Held on the last day of February, Rare Disease Day is a global campaign to raise awareness of rare diseases and advocate for health equity.
Each year, top leaders from the FDA, NIH, organizations, industry, payers, medical and research institutions, meet to advance discussions and solutions on issues of critical importance to those living with and working in rare diseases.
