Information and Resources for Families & Individuals

Baby’s First Test

Run by the Genetic Alliance, this website is the nation’s newborn screening clearinghouse. It provides current educational and family support and services information, materials, and resources about newborn screening at the local, state, and national levels.

Genetic Alliance

Founded in 1986 as the Alliance for Genetic Support Groups, Genetic Alliance has become the world’s leading nonprofit health advocacy organization committed to transforming health through genetics. Their open network connects members of parent and family groups, community organizations, disease-specific advocacy organizations, professional societies, educational institutions, corporations, and government agencies to create novel partnerships.

Genetic and Rare Diseases Information Center

A collaborative effort of two agencies of the National Institutes of Health, The Office of Rare Diseases and the National Human Genome Research Institute, this website helps people find useful information about genetic conditions and rare diseases.

Help Me Understand Genetics Handbook

Published by the Genetics Home Reference, this online resource presents basic information about genetics in clear language and provides links to additional online resources.

My Family Portrait

Developed by the Surgeon General, My Family Portrait is a tool that can help families collect family health histories. It contains information and a form to fill out about your family health history, helps families understand their genetic inheritance and risk for disease, can be used to partner with medical professionals, and comes in several languages.

National Organization for Rare Disorders

Information, news research, resources and much more about rare disorders.

NHGRI’s Online Genetics Education Resources

The National Human Genome Research Institute has compiled a list of online genetics educational materials.

PacNoRGG Publications

Fact sheets and other resources for individuals and families developed by the Pacific Northwest Regional Genetics Group (PacNoRGG) about genetic testing, genetic screening, and some specific genetic conditions.

Understanding Genetics: A Guide for Patients and Health Professionals

Handbooks developed by the Genetic Alliance with information about genes, chromosomes, diagnosis, newborn screening, genetic testing, and more.