Resources for Families

Family Resources

Support & Advocacy

The following listing provides organizations and information designed to provide support to those affected by genetic conditions. There are also organizations dedicated to work and involvement for the purpose of advocating for improvement of care, treatment and awareness of genetic conditions.

Global Genes

Family Voices

Genetic Alliance


National Organization for Rare Disorders (NORD)

Parent to Parent

Newborn Screening
General Genetic and Genomic Information