Search NORD’s Database for reports on more than 1,200 diseases. Search database >
Find free webinars, fact sheets, infographics and other helpful materials. View resources >
Resources to help you start or grow your patient organization. View resources >
Visit our new platform where rare disease patients can fundraise, communicate and advocate. Start now >
NORD Patient Assistance Programs help patients obtain life-saving or life-sustaining medication. View programs >
The international advocacy day to bring widespread recognition of rare diseases as a global health challenge. Visit site >
Featured Student: Jennifer Shoskes
“In this interview, Jennifer talks about her inspiration for starting a NORD Student Chapter and where she hopes to see her career go working within the rare disease community”
NORD Creates Rare Disease Patient & Caregiver Resource Center
“The Patient and Caregiver Resource Center is a one- stop shop to many of the helpful resources we provide to the 30 million people with rare diseases and their families.”
Updated Study Analyzes Use and Cost of Orphan Drugs
“Median annual cost for top 10 rare disease therapies is less than $10,000 per year.”
Patient Advocates Warn Against New Insurance & PBM Policy That Increases Patient Out-of-Pocket Drug Costs
“As Open Enrollment Begins, Beneficiaries who Rely on Copay Coupons Must Consider this New Policy When Selecting a Health Plan”
