- Genetic Alliance (202-966-5557): This organization is devoted to promoting optimum health care for people suffering from genetic disorders.
- Hereditary Disease Foundation (212-928-2121): The HDF offers resources and testing information for families.
- Genetics Home Reference: A guide to understanding genetic conditions, from the National Institutes of Health.
- Genetic and Rare Diseases Information Center (888-205-2311): The Center provides immediate, virtually round-the-clock access to experienced information specialists who can furnish current and accurate information—in both English and Spanish—about genetic and rare diseases.
- Mountain States Regional Genetic Network: Resource links to associations, support groups, and disease-related resources.