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Patient Advocacy Groups

Patient advocacy groups specializing in familial forms of amyotrophic lateral sclerosis, frontotemporal dementia (FTD), primary lateral sclerosis (PLS), hereditary spastic paraplegia (HSP), and progressive muscular atrophy (PMA) are here to help you. They are devoted to providing support, resources and services for patients and families. Join these groups to help yourself, your family, and other patients.

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The ALS Association

Focuses on care, advocacy, and research to discover treatments and a cure for ALS while empowering those affected to live life to the fullest.

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Muscular Dystrophy Association

Supports efforts to transform the lives of people with muscular dystrophy, ALS, and related neuromuscular diseases.

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Association for Frontotemporal Degeneration

Aims to improve the quality of life of people affected by frontotemporal degeneration (FTD) and drive research to a cure.

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Spastic Paraplegia Foundation

Supports research to cure two similar upper motor neurological diseases: hereditary spastic paraplegia and primary lateral sclerosis.