Resource listing: Neurology-focused patient advocacy groups

Navigating the challenges posed by neurologic disorders can be a daunting journey, both for patients and their families. Fortunately, there are numerous patient support groups and advocacy organizations in the United States dedicated to providing essential resources, support, and a sense of community to those affected by these conditions. In this comprehensive list, we introduce a range of patient advocacy groups that provide a network of care for individuals and families living with neurologic conditions.

ALS Association

• Goals: The ALS Association is committed to fighting amyotrophic lateral sclerosis (ALS) through research, support for patients and families, and advocacy. They aim to discover effective treatments and, ultimately, a cure for this devastating neurodegenerative disease.
• Website: www.alsa.org

Alzheimer's Association

• Goals: The Alzheimer's Association is committed to advancing research to find a cure for Alzheimer disease and improving the lives of individuals affected by this neurodegenerative condition. They provide support services, advocate for Alzheimer disease-related policies, and raise awareness.
• Website: www.alz.org

American Migraine Foundation

• Goals: to mobilize a community for patient support and advocacy, as well as drive and support impactful research that translates into advances for patients with migraine and other disabling diseases that cause severe head pain.
• Website: https://americanmigrainefoundation.org/

American Brain Foundation

• Goals: The American Brain Foundation is dedicated to funding research to find cures and treatments for brain and nervous system diseases. They aim to improve the lives of individuals affected by neurologic disorders through research and advocacy efforts.
• Purpose statement: The American Brain Foundation promotes and invests in research across the whole spectrum of brain disease. We believe that when we cure one of these diseases, we will cure many.
• Website: www.americanbrainfoundation.org

Autism Speaks

• Goals: Autism Speaks is dedicated to promoting solutions for individuals with autism spectrum disorders and their families. They fund research to better understand autism, offer resources, and advocate for policies that support individuals with autism.
• Website: www.autismspeaks.org

Brain Injury Association of America

• Goals: Dedicated to ensuring that everyone in the United States who sustains a brain injury is diagnosed, treated, and accepted. They seek to advance awareness, research, treatment, and education and to improve the quality of life for all people affected by brain injury.
• Website: https://www.biausa.org/

Child Neurology Foundation

• Goals: The Child Neurology Foundation supports children with neurologic disorders by providing education, resources, and advocacy. They aim to improve the quality of life for pediatric neurology patients and their families.
• Website: www.childneurologyfoundation.org

CurePSP

• Goals: CurePSP is dedicated to improving the lives of individuals and families affected by progressive supranuclear palsy (PSP), corticobasal degeneration (CBD), and other related brain diseases. They support research and provide resources for patients and caregivers.
• Website: www.psp.org

Dysphonia International

• Goals: This association supports individuals with spasmodic dysphonia, a neurologic voice disorder. They aim to provide information, resources, and advocacy efforts to improve the lives of those affected.
• Website: www.dysphonia.org

Epilepsy Foundation

• Goals: The Epilepsy Foundation works to lead the fight against epilepsy by promoting awareness, offering support services, and funding research to find a cure. They also advocate for policies that improve the lives of people with epilepsy.
• Website: www.epilepsy.com

The Michael J. Fox Foundation for Parkinson's Research

• Goals: This foundation is dedicated to finding a cure for Parkinson disease and improving therapies for those living with the condition. They fund research, promote awareness, and provide resources to patients and their families.
• Website: www.michaeljfox.org

Myasthenia Gravis Foundation of America

• Goals: This foundation supports individuals with myasthenia gravis, a neuromuscular disorder. They fund research, provide resources, and advocate for improved care and understanding of the condition.
• Website: www.myasthenia.org

Narcolepsy Network

• Goals: Narcolepsy Network offers support, education, and advocacy for individuals living with narcolepsy, a neurologic sleep disorder. They aim to raise awareness and improve the quality of life for those with narcolepsy.
• Website: www.narcolepsynetwork.org

National Aphasia Association

• Goals: The National Aphasia Association provides support and resources for individuals with aphasia, a communication disorder often associated with neurologic conditions like stroke. They offer education and raise awareness.
• Website: www.aphasia.org

National Ataxia Foundation

• Goals: The National Ataxia Foundation focuses on supporting individuals with ataxia and their families. They provide information, resources, and research funding to advance the understanding and treatment of ataxia disorders.
• Website: www.ataxia.org

National Headache Foundation

• Goals: The National Headache Foundation focuses on improving the understanding of headache disorders and finding better treatments. They offer resources and support to individuals living with migraines and other headache conditions.
• Website: www.headaches.org

National Multiple Sclerosis Society

• Goals: The National MS Society is committed to improving the lives of people affected by multiple sclerosis. They provide support, fund research, and advocate for policies that enhance access to care and treatments for individuals with multiple sclerosis.
• Website: www.nationalmssociety.org

Rett Syndrome Research Trust

• Goals: The Rett Syndrome Research Trust is dedicated to accelerating the discovery of treatments and a cure for Rett syndrome, a rare neurologic disorder that primarily affects girls. They fund research initiatives and raise awareness.
• Website: www.rsrt.org

Spinal Muscular Atrophy Foundation

• Goals: This foundation is committed to accelerating the development of spinal muscular atrophy (SMA) treatments and improving the lives of individuals with SMA and their families. They fund research, provide support, and raise awareness about this rare neuromuscular disorder.
• Website: www.smafoundation.org

Tourette Association of America

• Goals: This organization works to raise awareness and support research into Tourette syndrome and tic disorders. They aim to improve the lives of individuals affected by these conditions through education and advocacy efforts.
• Website: www.tourette.org

These patient advocacy groups play a crucial role in supporting individuals and families affected by neurologic conditions while also driving research efforts and advocating for policy changes to improve patient care and outcomes.

Related MedLink Neurology content: Patient Handouts

MedLink acknowledges the use of GPT-4 in drafting this blog entry.