A patient advocacy organization for rare diseases that provides available research studies, financial assistance, and informational materials for more than 1,200 diseases. Its rare disease video library is an educational resource consisting of webinars for patients and caregivers, medical education, and progress on current research. The Patient Assistance Program provides aid to support travel, insurance costs, routine testing, and consultations. It also provides links to other providers who can assist with financial costs. The Rare Action Network is a program designed to improve the quality of life of patients through community fundraising and advocacy with state legislators.
National Organization for Rare Disorders (NORD)