Links to Resources
About Rare Diseases
Description: A disease is rare when it affects fewer than 1 in 2,000 people.
Description: The National Organization for Rare Disorders' (NORD) video provides a brief introduction to rare disease topics for patients and caregivers.
Description: The Genetic and Rare Diseases (GARD) Information Center has developed a database that includes nearly 6000 rare disorders. You can explore rare disease resources for medical professionals, population estimates, symptoms, causes, and sources of help such as patient advocacy organizations.
Description: The National Organization for Rare Disorders' (NORD) database includes 1,200 rare disorders. You can explore rare disease reports that include information on symptoms, causes, treatments, clinical trials, and sources of help such as patient advocacy organizations.
Rare Disease Events
Description: Rare Disease Day is the globally-coordinated movement on rare diseases, working towards equity in social opportunity, healthcare, and access to diagnosis and therapies for people living with a rare disease.
Description: This is the National Organization for Rare Disorders' (NORD) patient and family-focused event. It provides an educational, immersive, and connection-driven experience for all attendees. Hear real stories from our community and gain practical knowledge to help you and your loved ones live your best rare life
Rare Disease Organizations
Description: CORD is Canada’s national network for organizations representing all those with rare disorders.
Description: NORD is based in the United States. Since 1983, NORD has been a national steward and a steadfast partner helping those who battle and care for rare disease feel seen, heard, supported and connected.
Description: Global Genes is committed to providing information, resources and connections to all communities affected by rare diseases.
Description: The Rare Disease Foundation (RDF) was founded in Vancouver, British Columbia in 2008. Today, the foundation serves a global community with research funding, resources and community programs.