Below is a comprehensive list of existing ALS genetics resources mentioned throughout this page.
Additional ALS genetics resources
ALS Canada Genetics Fact Sheet
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ALS Canada Genetics Glossary
Amyotrophic Lateral Sclerosis (ALS) Causes/Inheritance MDA
Antisense Therapy for ALS The ALS Association
Ethical Considerations in ALS/MND Genetics Alliance of ALS/MND
Familial ALS Resource Booklet The ALS Association
Familial amyotrophic lateral sclerosis (FALS) and genetic testing factsheet from the ALS association
Genetic testing for people living with ALS Les Turner ALS Foundation
Genetics: Can genes affect the type of ALS/MND? Alliance of ALS/MND
Genetics: What can we do about genetic ALS/MND? Alliance of ALS/MND
Therapies Targeting ALS-Linked Genetic Mutations The ALS Association
Les Turner My ALS decision tool for genetics
About this tool: People living with ALS can get genetic testing to learn more about why they developed the condition. The information you learn from genetic testing can help you make decisions about your ALS care and plan for the future. If you have ALS, you can use this tool to learn about genetic testing and decide if it’s right for you.
ALS Canada Genetics and ALS Webinar
Genetic counselling and diagnostic genetic testing for ALS/MND and FTD webinar alliance of ALS/MND
Genetic ALS & FTD: End the Legacy Presentation to the FDA
What’s in a gene? Introduction to familial ALS I AM ALS
The role of genetics and ALS MDA
Families for the Treatment of Hereditary MND (FATHoM) Podcast Series University of Oxford
Canada’s Genetic Non Discrimination Act: An Overview and Perspective
Investigating the Genetic Profile of the Amyotrophic Lateral Sclerosis/Frontotemporal Dementia (ALS-FTD) Continuum in Patients of Diverse Race, Ethnicity and Ancestry
Expanding Clinical Spectrum of C9orf72-Related Disorders and Promising Therapeutic Strategies
Genetic epidemiology of amyotrophic lateral sclerosis: a systematic review and meta-analysis
Revealing the Mutational Spectrum in Southern Africans With Amyotrophic Lateral Sclerosis
Mutations in FUS are the most frequent genetic cause in juvenile sporadic ALS patients of Chinese origin
The epidemiology and genetics of Amyotrophic lateral sclerosis in China
For more non-genetic specific information:
Diversity and Inclusion Efforts at I AM ALS
Gaslighting: ALS, anti-Blackness, and medicine
ALS Canada & Global Neuro YCare
I am Mindy Uhrlaub – How I Talked to My Teens About My Genetic Status I AMS ALS
Big Feelings in Familial ALS: A Community Conversation about Generational Trauma
Meanwhile, for general resources on how to talk to children about ALS or FTD, please see below:
AFTD: Support for Kids and Teens
Helping Children Cope For Parents
When Someone Special Has ALS Children
When Your Parent Has ALS A Booklet for Teens
Family Planning resources:
Having Children While at Risk of Familial ALS I AM ALS
ALS Learning Series: Family Planning and ALS
Advanced learning resources
Amyotrophic Lateral Sclerosis online Database (ALSoD)
The Amyotrophic Lateral Sclerosis online Database (ALSoD) is the longest serving and most comprehensive gathering of ALS genetics information.
ClinGen ALS Gene Curation Expert panel
The ClinGen ALS Gene Curation Expert panel is a global group of ALS genetic experts who evaluate evidence for genes’ abilities to confer symptoms of ALS. They monitor the latest discoveries and literature to determine whether a specific genetic variant is classified as one likely to be causative or not causative of ALS, or when the evidence is insufficient, to state that a particular variant is one they are watching to learn more (Variant of Unknown Significance or VUS).
This panel works together with a ClinVar ALS Variant Curation Panel that maintains a public database of variant interpretations.
ClinGen ALS Gene Classification List
Research Articles:
Systematic evaluation of genetic mutations in ALS: a population-based study
Genetics of amyotrophic lateral sclerosis: seeking therapeutic targets in the era of gene therapy
Trial of Antisense Oligonucleotide Tofersen for SOD1 ALS
Rise of the Genomic Medicine Era in Amyotrophic Lateral Sclerosis
Gene Therapy in Amyotrophic Lateral Sclerosis
Incorporating Genetic Testing Into the Care of Patients With Amyotrophic Lateral Sclerosis/Frontotemporal Degeneration Spectrum Disorders
Genetic Testing for Amyotrophic Lateral Sclerosis and Frontotemporal Dementia: Impact on Clinical Management
Toward genetic counseling practice standards for diagnostic testing in amyotrophic lateral sclerosis and frontotemporal dementia
Variable reporting of C9orf72 and a high rate of uncertain results in ALS genetic testing
Other ALS resources & support
ALS Canada First Steps After an ALS Diagnosis
ALS Guide: A resource for people living with ALS
ALS Canada Fact Sheets
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