Genetics

ALS Genetics & Gene Carriers

Genetics is an important part of understanding ALS.

Genetic changes can help explain disease in some people living with ALS, identify risk within families, guide eligibility for gene-specific treatments or clinical trials, and allow researchers to study ALS before symptoms begin.

Genetic ALS is not one disease. Different genes can produce different patterns of disease, age of onset, progression, penetrance, and overlap with conditions such as frontotemporal dementia (FTD).

Current expert consensus recommends offering genetic testing to all people with ALS. At minimum, testing should include C9orf72 repeat expansion analysis and sequencing of SOD1, FUS, and TARDBP.

Sources: Evidence-Based Consensus Guidelines for ALS Genetic Testing and Counseling

View ALS genetic testing consensus guidelines

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Start with the information that fits your situation.

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I have ALS

A genetic test may identify a genetic cause or contributor to ALS even when there is no known family history of the disease.

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I do not have ALS, but a gene runs in my family

People who do not have ALS symptoms but come from a family affected by ALS or FTD may choose to learn more about predictive genetic testing and presymptomatic research.

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ExploreALS Gene LibraryExplore established ALS-associated genes, how they differ, and what researchers currently understand about their relationship to ALS and FTD.Explore the Gene Library

This information is for education and does not replace individualized medical advice, genetic counseling, diagnosis, or treatment. Genetic risk, penetrance, and testing implications can differ by gene, variant, family, and individual.

Last reviewed: 09-30-2026

Medical information should be reviewed periodically as genetic research and clinical trials change.