Patient Information Center
NORD has a dedicated staff of information specialists to answer your questions about patient resources, clinical trials and more. NORD’s Rare Disease Database provides reports in patient-friendly language about more than 1,200 rare diseases. Search the NORD Organizational Database by disease name to find patient organizations for your disease. To talk to a NORD Information Center staff member, call (800) 999-NORD (tollfree) or contact us here.
NORD’s RN provides information about rare diseases and related resources to patients, family members, and others. If you have questions on topics such as living with a rare disease, caring for a loved one, reimbursement, or accessing needed services, the NORD nurse may be able to help.
NORD’s genetic counselor provides guidance regarding indications for clinical genetic evaluations and genetic testing, answers questions about the genetic basis of diseases, and makes referrals to genetic counseling centers.
Help us create a database of physicians who are experts on rare diseases. Submit your medical expert’s name, title, email address, phone number, and mailing address. This database is for our internal use and will not be posted publically. This information helps us identify the specialists who are focused on rare diseases. Additionally, we may call upon the expert to help us review information in their area of expertise. Submit a name here.