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Neurological and Neuromuscular Disorders

This page lists by topic area a collection of organizations, journals, and online resources that provide information about treatment, support, or services for people with disabilities, as well as their families and professionals who support them.

On this page:

Alzheimer's Disease and Related Dementias

  • Alzheimer’s Association.
    The Alzheimer's Association helps to accelerate global research, driving risk reduction and early detection, and maximizing quality care and support. The Association provides information on Alzheimer’s disease and related dementias, offers help and support, local resources, and more.
    Helpline: (800) 272-3900; available 24 hours a day 7 days a week.
    Contact form.
  • Alzheimer’s and related Dementias Education and Referral (ADEAR) Center.
    The ADEAR Center compiles, archives, and disseminates information concerning Alzheimer’s disease and related dementias for health professionals, people with Alzheimer’s disease or a related dementia and their families, and the public. The ADEAR Center answers questions about Alzheimer’s disease and related dementias, provides free publications, provides information on clinical trials, and provides referrals to local supportive services and research centers that specialize in research and diagnosis.
    Toll free: (800) 438-4380; available Monday to Friday from 8:30 am to 5 pm, ET.
    Email: adear@nia.nih.gov.
     
  • Alzheimer’s Foundation of America (AFA).
    AFA provides support, services, and education to individuals, families, and caregivers affected by Alzheimer’s disease and related dementias nationwide, and funds research for better treatment and a cure.
    Toll Free Hotline: (866) 232-8484.
    Email: info@alzfdn.org.

Amyotrophic Lateral Sclerosis (ALS or Lou Gehrig's Disease)

  • ALS Association (AKSA).
    ALSA is a national non-profit organization that funds research, provides assistance for people with ALS, coordinates multidisciplinary care through certified clinical centers, and fosters government partnerships. ALSA provides comprehensive patient services and support to the ALS community, educates the public, and works with government agencies on public policy.
    Toll Free: (800) 782-4747.
    Email: alsinfo@als.org.

Aphasia

Brachial Plexus

  • United Brachial Plexus Network (UBPN).
    UBPN is a non-profit organization devoted to providing information, support, and leadership for people with brachial plexus, their families, and professionals. Resources include an online registry, various outreach and awareness programs, and publications.
    Phone: (781) 315-6161.

Cerebral Palsy

Epilepsy

  • Epilepsy Foundation.
    The Epilepsy Foundation promotes awareness and understanding about epilepsy, advocates for laws that matter to people with epilepsy, and funds epilepsy research. The Epilepsy Foundation connects people to treatment, support, and resources; funds innovative research and the training of specialists; and educates the public about epilepsy and seizure first aid.
    Toll free: (800) 332-1000; (301) 459-3700.
    Fax: (301) 577-2684.

General Resources

  • National Institute of Neurological Disorders and Stroke (NINDS).
    The mission of NINDS is to seek fundamental knowledge about the brain and nervous system and to use that knowledge to reduce the burden of neurological disease through research, education, and the dissemination of information. The website provides information and resource pages on disorders/diseases listed from A to Z.
    Toll Free: (800) 352-9424.
     
  • Siegel Rare Neuroimmune Association (SRNA).
    SRNA is a non-profit organization that supports individuals with rare neuroimmune diagnoses and their families; promotes awareness to empower patients, families, clinicians, and scientists; maintains a collaborative and dedicated clinical care network; and helps advance scientific understanding and research.
    Phone: (855) 380-3330.
    Contact form.

Huntington's Disease

Multiple Sclerosis (MS)

Parkinson's Disease

  • American Parkinson’s Disease Association (APDA).
    APDA is a national grassroots network provides patient services and educational programs, raises awareness about Parkinson’s disease (PD), and supports research designed to unlock the mysteries of PD. APDA provides support and information through a network of chapters and information and referral centers.
    Toll free: (800) 223-2732.
    Fax: (718) 981-4399.
    Email: apda@apdaparkinson.org.
     
  • Parkinson’s Foundation.
    The Parkinson’s Foundation works to make life better for people with Parkison’s disease and their families by improving care and advancing research. The Foundation provides a helpline to answer questions and provide referrals to nearby experts and local resources; offers weekly at-home events on wellness, exercise, and mental health; and provides a newly diagnosed kit that helps people recently diagnosed with Parkinson’s disease and their care partners navigate their diagnosis and connects them with essential resources.
    Toll free: (800) 473-4636; available Monday through Friday from 9 am to 7 pm, ET.
    Email: Helpline@Parkinson.org.
     
  • The Michael J. Fox Foundation (MJFF).
    MJFF is a non-profit organization that works to find a cure for Parkinson’s disease by funding research and ensuring the development of improved therapies for those living with Parkinson’s disease. MJFF provides information and resources on Parkinson’s disease; shares information and tools for researchers; and advocates for people with Parkinson’s disease, their families, caregivers, and researchers.
    Phone: (212) 509-0995.
    Email: info@michaeljfox.org.

Stroke

  • American Stroke Association (ASA).
    ASA is a non-profit organization and is a division of the American Heart Association (See Heart Disease section) that provides information and resources to people with stroke, their families, caregivers, and professionals.
    Toll free: (888) 4-STROKE (476-7653); available Monday to Friday from 9 am to 9 pm ET.
     
  • Stroke Engine.
    Stroke Engine is a Canadian website for people who have experienced a stroke, their families, and health professionals who work in the field of stroke rehabilitation. Stroke Engine focuses on stroke rehabilitation and interventions and provides information derived from quality articles, websites, and systematic reviews.
    Email: strokengine@gmail.com.

Traumatic Brain Injury (TBI)

  • Brain Injury Association of America (BIAA).
    BIAA is a nonprofit, national advocacy organization that works to increase public awareness of brain injury, provide education and information about TBI and promote linkage to support groups and local resources through a toll-free Family Helpline.
    Toll Free: (800) 444-6443.
    Email: info@biausa.org.
  • Brain Trauma Foundation (BTF).
    The mission of BTF is to improve TBI patient outcomes worldwide by developing best practice guidelines, conducting clinical research, and educating medical professionals and consumers. BTF has developed scientific, evidence-based diagnostic and treatment guidelines to control secondary damage to the injured brain. Visitors to the website can view videos about coma, the coma checklist, and the BTF coma guidelines.
    Contact Form.
     
  • BrainLine.
    Brainline is a national multimedia project at WETA-TV, the flagship PBS station in Washington, DC, that offers information and support to anyone whose life has been affected by a brain injury or post-traumatic stress disorder (PTSD), including military personnel and Veterans, people with brain injuries, their families and friends, and the professionals that work with them.
    Phone: (703) 998-2020.
    Email: info@BrainLine.org.
     
  • Centre for Neuro Skills (CNS).
    CNS teaches life skills to people with head injuries, helping them to achieve independence. CNS helps to maximize independence and achieve the maximum possible quality of life for people with brain injuries.
    Toll free: (800) 922-4994.
    Contact form.
     
  • International Brain Injury Association (IBIA).
    IBIA is dedicated to the development and support of multidisciplinary medical and clinical professionals, advocates, policy makers, consumers, and others who work to improve outcomes and opportunities for people with brain injuries.
    Phone: (703) 960-6500 (East Coast of the US); (713) 526-6900 (Central US).
    Fax: (703) 960-6603 (Virginia Office); (801) 421-0269 (Houston, Texas office).
    Email: congress@internationalbrain.org.
     
  • Model Systems Knowledge Translation Center (MSKTC) – TBI.
    MSKTC summarizes research, identifies health information needs, and develops information materials for individuals living with traumatic brain injury (TBI) and people who support them. The evidence-based materials are available in a variety of platforms: consumer-oriented factsheets; slideshows on topics related to living with a TBI; and the hot topic module consists of resources to help individuals with TBI, and their partners navigate relationships.
    Phone: (202) 403-5600.
    Email: msktc@air.org.
     
  • National Resource Center for Traumatic Brain Injury (NRCTBI).
    NRCTBI provides relevant, practical information for professionals, people with brain injury, and family members.
     
  • Traumatic Brain Injury Resource Center (TBIRC).
    TBIRC supports TBI survivors, caregivers, and their families; informs service providers; promotes prevention; and increases awareness of the impact of TBI on society.
    Toll Free: (419) 214-0555.
    Contact Form.

Tourette's Syndrome