Resources for Patients and Families

Organizations that provide patient support and advocacy.

• Ask the Geneticist
• Family Village
• Financial Assistance Information (National Human Genome Research Institute)
• Frequently Asked Questions about Clinical Research (National Human Genome Research Institute)
• Genetic Alliance
• Genetic and Rare Diseases Information Center
• Genetics: The Basics (JAMA Patient Page)
• Genetics and Genomics for Patients and the Public (National Human Genome Research Institute)
• Madisons Foundation
• Making Sense of Your Genes: A Guide to Genetic Counseling (National Society of Genetic Counselors)
• March of Dimes
• MedlinePlus Health Topic: Health Literacy
• National Organization for Rare Disorders (NORD)
• Understanding Genetics: A Guide for Patients and Professionals (Genetic Alliance)

In addition, Genetics Home Reference presents applicable resources on each disease or condition page.