Resources


Advocacy ATLAS
A toolkit created by Genetic Alliance, Parent to Parent USA, and Family Voices for individuals with special healthcare needs and their families. The interactive map provides individuals and families with tools and strategies to advocate for themselves and their loved ones. 


American Medical Association (AMA)
AMA provides patient-friendly information on genetics and policy statements surrounding genetic testing.


American College of Medical Genetics (ACMG)
Professional information on genetics.


Canadian Medical Association (CMA)
CMA provides policy statements surrounding genetic testing for Canadian residents.


Genetics and Rare Diseases Information Center (GARD)
GARD provides the public with access to current, reliable, and easy-to-understand information about rare genetic diseases in English or Spanish.


Genetics Home Reference
Information about how genes affect your health: what genes are, how they work and how they can cause illnesses.


National Human Genome Research Institute (NHGRI)
Information on human genetic disease and human genetic research, and an explanation of your rights concerning genetic discrimination.


National Society of Genetic Counselors (NSGC)

National professional body for genetic counselors. Provides information about genetic counseling and where to find a medical genetics clinic near you.


Canadian Association of Genetic Counsellors (CAGC)
Canadian professional body for genetic counsellors. Provides information about genetic counseling and where to find a medical genetics clinic near you (Canadian focus).


National Institutes of Health (NIH): What are the benefits of genetic testing?
Information provided about the utility of genetic testing.


National Institutes of Health (NIH): What are the risks and limitations of genetic testing?
Information provided about the possible risks and limitations associated with genetic testing.


Genetic Alliance- UK. Benefits and Risks for Genetic Testing

Information provided about the possible risks and benefits of genetic testing.


National Institutes of Health (NIH): What is genetic discrimination?
Information on discrimination laws in the US and what considerations need to be made prior to pursuing genetic testing.


National Institutes of Health (NIH): What do the results of genetic tests mean?
& National Institutes of Health (NIH): Genetic Discrimination
These sites provide detailed information on the realities and limitations surrounding protection of your genetic information in the US.

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