Amyotrophic lateral sclerosis (ALS) is a neurodegenerative disease characterized by progressive muscular paralysis reflecting degeneration of motor neurons in the primary motor cortex, corticospinal t...
Comprehensive, easy-to-understand information about this condition
How we create this content →Actionable guidance for navigating care for amyotrophic lateral sclerosis
For navigating care in amyotrophic lateral sclerosis (ALS), consider seeking specialists such as a neurologist with expertise in motor neuron diseases or a neuromuscular specialist. Engaging with patient organizations can provide support and resources; notable ones include the ALS Association (https://www.als.org) and the ALS Therapy Development Institute (https://als.net). These organizations often have information on clinical trials and research opportunities. Additionally, you may want to explore participation in patient registries to contribute to ongoing studies and connect with others facing similar challenges. For genetic counseling, while no specific genetic basis has been established, discussing family implications with a healthcare provider can be beneficial. Finding centers of excellence or experienced providers in ALS can also enhance your care experience.
Consider asking your healthcare providers these condition-specific questions
Connect with organizations supporting the amyotrophic lateral sclerosis community
Helpful links for rare disease information and support
Actionable guidance for navigating care for amyotrophic lateral sclerosis
For navigating care in amyotrophic lateral sclerosis (ALS), consider seeking specialists such as a neurologist with expertise in motor neuron diseases or a neuromuscular specialist. Engaging with patient organizations can provide support and resources; notable ones include the ALS Association (https://www.als.org) and the ALS Therapy Development Institute (https://als.net). These organizations often have information on clinical trials and research opportunities. Additionally, you may want to explore participation in patient registries to contribute to ongoing studies and connect with others facing similar challenges. For genetic counseling, while no specific genetic basis has been established, discussing family implications with a healthcare provider can be beneficial. Finding centers of excellence or experienced providers in ALS can also enhance your care experience.
Consider asking your healthcare providers these condition-specific questions
Connect with organizations supporting the amyotrophic lateral sclerosis community
Helpful links for rare disease information and support
Actionable guidance for navigating care for amyotrophic lateral sclerosis
For navigating care in amyotrophic lateral sclerosis (ALS), consider seeking specialists such as a neurologist with expertise in motor neuron diseases or a neuromuscular specialist. Engaging with patient organizations can provide support and resources; notable ones include the ALS Association (https://www.als.org) and the ALS Therapy Development Institute (https://als.net). These organizations often have information on clinical trials and research opportunities. Additionally, you may want to explore participation in patient registries to contribute to ongoing studies and connect with others facing similar challenges. For genetic counseling, while no specific genetic basis has been established, discussing family implications with a healthcare provider can be beneficial. Finding centers of excellence or experienced providers in ALS can also enhance your care experience.
Consider asking your healthcare providers these condition-specific questions
Connect with organizations supporting the amyotrophic lateral sclerosis community
Helpful links for rare disease information and support
Research studies investigating treatments and therapies for this condition.
Active Trials
Total Trials
Data from ClinicalTrials.gov Feb 1, 2026
The ALS Association is the only national nonprofit organization fighting ALS on every front.
Patient Advocacy Groups (PAGs) provide support, resources, and community for patients and caregivers.
European rare disease database
Genetic and Rare Diseases Info Center
4 peer-reviewed sources from PubMed
AI-Generated Content: This summary was generated using AI. Always consult with qualified healthcare providers for medical guidance.
Kisho delivers this disease record via API, including phenotypes (HPO), genes, orphan drug designations, screening status, and PAG mapping, with version history and governance.
AI-curated news mentioning amyotrophic lateral sclerosis
Updated Dec 22, 2025
The Agency for Toxic Substances and Disease Registry (ATSDR) is seeking public comment on the proposed National Amyotrophic Lateral Sclerosis (ALS) Registry. This initiative aims to enhance data collection efforts related to ALS, promoting better understanding and support for affected individuals.
A personal story highlights the journey of living with ALS, emphasizing resilience and community support. The narrative aims to inspire others facing similar challenges.
The ATSDR has launched the National ALS Registry to enhance understanding of Amyotrophic Lateral Sclerosis (ALS). This initiative aims to gather critical data on the disease, which affects thousands of individuals in the U.S.