This family-written guide for families with a genetic condition offers advice and tips from those who have gone through it themselves. Families share their experiences to help you navigate the challenges and uncertainties that come …
Family Resources
Center for Human Genomics and Precision Medicine Patients Page
The University of Wisconsin Center for Human Genomics and Precision Medicine patients page answers frequently asked questions and provides resources for patients and their families.
Genetic Alliance
Resources to assist individuals and their families in understanding family health history, signs/symptoms, and screening/testing options along with their implications, diagnosis, treatment, and long-term follow-up. Information about genetic research and clinical trials.
Genetic and Rare Diseases Information Center (GARD)
GARD is a program of the National Center for Advancing Translational Sciences (NCATS) to provide access to current, reliable, and easy to understand information about rare or genetic diseases in English or Spanish.
National Organization for Rare Diseases (NORD)
A patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them. NORD, along with its more than 300 patient organization members, is committed to the identification, treatment, and cure of …
Unique | Understanding Rare Chromosome and Gene Disorders
Unique provides support, information and networking to families affected by rare chromosome and gene disorders. Patient guides available in English and Spanish.
MedlinePlus
Information about the signs and symptoms, genetic cause, and inheritance pattern of various genetic conditions. (English and Spanish).