Patient Advocacy Resources
What to Do After Testing
We understand that genetic testing results can raise many questions. On this page, you’ll find helpful information on genetic counseling services, resources, and patient advocacy groups.
Genetic Counseling Services
Your provider may recommend genetic counseling at some point during the testing process. Genetic counselors can help explain complex testing results or answer questions, big or small. Below are some general resources on genetic counseling services:
The National Society of Genetic Counselors can help you find local genetics counseling professionals and other resources.
MedlinePlus Genetics is a patient-focused encyclopedia with information on genetics, testing, rare and common genetic conditions, and links to advocacy groups and more resources.
Resources & Advocacy Groups
There are a variety of patient and family advocacy groups actively supporting rare genetic disorders, reproductive genetics, and precision oncology across the U.S. and globally. These groups provide support in many different ways, from sharing personal experiences to advocating for federal and local legislation. Below are just a few of the many independent groups.