Synonyms: ALS | Charcot disease | Lou Gehrig disease
A neurodegenerative disease characterized by progressive muscular paralysis reflecting degeneration of motor neurons in the primary motor cortex corticospinal tracts brainstem and spinal cord.
Data from Orphanet are used to provide information on a disease's name, synonym(s), and overview. Reference: Access aggregated data from Orphanet at Orphadata. Orphadata: Free access data from Orphanet. © INSERM 1999. Available on http://www.orphadata.org. Data version May 2026
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Advocacy Organizations
ALS Ride For LIfe
ALS Ride For Life was founded in 1997 as a patient-driven, volunteer organization with the mission of raising research funds to find a cure for Amyotrophic Lateral Sclerosis (ALS), supporting patients and their families through patient services, raising public awareness and providing the community with the latest ALS news, information and inspiration.
Association Aux Pas du Coeur – Côte d’ivoire
Our organization wants to raise awareness and recognition of rare diseases in Ivory Coast. Our mission is to: Raise awareness and campaign to help with the diagnosis and free therapeutic care of patients. Request and/or contribute to actions relating to the training of the medical profession to be able to make a final diagnosis and ensure continuous monitoring of patients easily.
Fundacion Powerchair Football Argentina
To develop Powerchair Football in Argentina in order to integrate people with motor disabilities (SMA, Duchenne muscular dystrophy, Achondroplasia, Rare Diseases) into sports practice and to promote their social inclusion, based on empowerment, independence, and the creation of new bonds and friendships.
Genetic Support Network of Victoria
The Genetic Support Network of Victoria is an organisation that supports people living with genetic, undiagnosed and rare conditions and those who support them including community and families, patient support organisations, health professionals and industry. Our vision is our community flourishing and living their best lives.
KIF1A.ORG
KIF1A.ORG is a global community dedicated to improving the lives of those affected by KIF1A Associated Neurological Disorder (KAND) and accelerating research to find a cure.
Matt’s Place Foundation
Matt’s Place Foundation provides; accessible housing, financial assistance for accessible accommodations and compassionate support to families facing ALS. Inspired by my husband, Matt Wild, a U.S. Marine Corps veteran diagnosed with ALS in 2015, we’re committed to ensuring no family faces this disease alone. Until there’s a cure, we will stand by ALS families—every step of the way.
Melanin Children Matter Inc
Melanin Children Matter Inc. services children, heals families, and educates society while enhancing awareness of childhood rare diseases and autism, with a focus on children of color. We fund research for SPTLC2 (pediatric ALS), advocate for early diagnosis and equitable healthcare access, address racial disparities, and work to improve representation in rare disease research and clinical trials.
Neuromuscular Disease Foundation
The Neuromuscular Disease Foundation's (NDF) mission is to enhance the quality of the lives of people living with GNE Myopathy (also known as HIBM) through advocacy, education, outreach, and funding clinical research focused on treatments and a cure.
Unfixed
Unfixed produces media that elevates stories of people living with chronic illness, rare disease and disability. The Unfixed portfolio of projects demonstrates that living well is not about eradicating our wounds and weaknesses but understanding how they complete our identities and equip us to help others. Current and past productions include multiple mini-series, a podcast and feature film.
We are Familial ALS
To empower , provide support and advocate for the Genetic ALS community, especially those who are presymptomatic.
patriot for growth and development initiative
Mission: Patriots for Growth and Development Initiative (PGDI) is dedicated to fostering sustainable development, promoting peacebuilding, and empowering marginalized communities. Through innovative programs, advocacy, and partnerships, we aim to create inclusive solutions that address conflict, enhance social justice, and uplift vulnerable populations.
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Clinical Trials
For a list of clinical trials in this disease area, please click here.