National Organization for Rare Disorders (NORD)
The National Organization for Rare Disorders® (NORD®) is the leading independent advocacy organization representing all patients and families affected by rare diseases. NORD is committed to the identification, treatment and cure of the 7,000 rare diseases that affect 30 million Americans, or 1 in every 10 people.
NORD began as a small group of patient advocates that formed a coalition to unify and mobilize support to pass the Orphan Drug Act of 1983. For more than 35 years, NORD has led the way in voicing the needs of the rare disease community, driving supportive policies and education, advancing medical research, and providing patient and family services for those who need them most.
Stay Covered: Open Enrollment Essentials for Rare Disease Families
Biomarker Testing in Rare Cancers: From Barriers to Breakthroughs
Mobilize for Newborn Screening: Tools for Advocates During Awareness Month
Dr. Vinay Prasad Keynote Address - NORD Scientific Symposium
Leveraging Innovative Trial Designs and Technologies to Accelerate - NORD Scientific Symposium
What’s Next in Rare Disease Data Collection and Clinical Use - NORD Scientific Symposium
Attend the 2025 NORD Rare Diseases and Orphan Products Breakthrough Summit
NORD® Rare Disease Scientific Symposium 2025
NORD CEO Pamela Gavin Statement on Passage of H.R. 1, July 2025
Rare Faces of Medicaid: Teresa
Rare Faces of Medicaid: Kristan
Understanding Desmoid Tumors: Causes, Symptoms, and Treatment
What is Activated Phosphoinositide 3-Kinase Delta Syndrome (APDS)?
Understanding Pulmonary Alveolar Proteinosis (PAP): Symptoms and Treatment
Understanding VHL (von Hippel-Lindau) Disease
Understanding Glioblastomas: Symptoms, Treatment, and Prognosis
Eosinophilic granulomatosis with polyangiitis (EGPA): Signs, Symptoms & the Path to Remission
Hypertrophic Cardiomyopathy Explained: Symptoms, Causes & Treatments
Severe Chronic Neutropenia (SCN) Explained
What Is Congenital Athymia? | Rare Disease Overview
Understanding PIK3CA-Related Overgrowth Spectrum (PROS)
What Is Glut1 Deficiency? A Rare Brain Metabolism Disorder
Hipertensión Arterial Pulmonar (HAP): Descripción General de los Síntomas
Pulmonary Arterial Hypertension (PAH): Symptom Overview
Living with Median Arcuate Ligament Syndrome (MALS): Symptoms and What to Know