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Neurological Disorders

NIH National Institute of Neurological Disorders and Stroke - NINDS

The National Institute of Neurological Disorders and Stroke (NINDS) was originally established in 1950. The NINDS conducts and supports research and research training on the causes, prevention, diagnosis, and treatment of neurological disorders and stroke. The Institute awards grants for research projects, program projects, and center grants; provides training support to institutions and fellowships to individuals in the fields of neurological disorders and stroke; conducts intramural and collaborative research; and collects and disseminates research information. Requests for information should be directed to the Office of Communications and Public Liaison.

Review Date: July 26, 2011

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Office of Orphan Products Development, U.S. Food and Drug Administration

The FDA's Office of Orphan Products Development (OOPD) is dedicated to promoting the development of products that demonstrate promise for the diagnosis and/or treatment of rare diseases or conditions. To locate such products, the OOPD interacts with the medical and research communities, professional organizations, academia, and the pharmaceutical industry, as well as rare disease groups. The OOPD administers the major provisions of the Orphan Drug Act (ODA) which provide incentives for sponsors to develop products for rare diseases. More than 228 drugs and biological products for rare diseases have been brought to market since 1983.

Review Date: August 16, 2011

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Accelerated Cure Project

Accelerated Cure Project for MS (ACP) is a nonprofit organization whose mission is to accelerate efforts toward a cure for multiple sclerosis (MS) by rapidly advancing research that determines its causes and mechanisms. We focus on providing biomedical researchers with resources that catalyze open scientific collaboration and make it possible for them to explore their novel research ideas rapidly and cost-efficiently. ACP’s strategic initiatives include the Multiple Sclerosis Discovery Forum, an online community for MS researchers, and the ACP Repository, a large-scale collection of highly-characterized biosamples available to scientists at any organization conducting research that contributes to our mission. All results generated through analysis of Repository samples and data are contributed back to the ACP Repository Database, resulting in an increasingly valuable and comprehensive information resource that can be analyzed to reveal new insights about MS. To date, ACP has enrolled almost 3,000 participants into the Repository through a network of 10 MS clinical centers across the United States. The samples provided by people with MS and related disorders have supported more than 60 research studies worldwide and generated more than 150 million returned data points.

Review Date: June 15, 2011

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Alzheimer's Association

The Alzheimer's Association is a nonprofit organization founded in 1980 to heighten public awareness of this degenerative brain disorder, provide support for patients and their families, aid research efforts, and advocate for legislation that responds to the needs of patients and family members of Alzheimer's Disease. The network includes more than 100 chapters and 1,800 support groups across the country. The Alzheimer's Association also maintains a toll-free 24-hour information and referral telephone number which provides information packets and referral to the nearest Association chapter. The Green-Field Library provides standard library services.

Review Date: January 02, 2009

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American Academy of Neurological and Orthopaedic Surgeons

The goal of this scientific and educational association of orthopedists and neurosurgeons is to improve the quality of care and directions for patients in the fields of orthopaedics and neurosurgery. The American Academy of Neurological and Orthopaedic Surgeons (AANOS) sets high standards for training, credentialing and surgical education and for the practice of orthopaedics and neurosurgery by teaching through the Journal of the American Academy of Neurological and Orthopaedic Surgery. AANOS also hosts meetings and workshops throughout the year for practitioners in the field.

Review Date: January 07, 2009

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American Academy of Neurology

The American Academy of Neurology (AAN) is a professional society composed of neurologists and professionals in related fields who share a common goal of continued growth and development of the neurological sciences.

Review Date: February 05, 2009

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American Parkinson Disease Association, Inc.

The American Parkinson Disease Association (APDA) was established in 1961 to provide information about the various services available to patients with Parkinson's disease and to make funds available for research in new drug therapies and to find a cure. The Association maintains 63 information and referral centers. The centers also provide educational booklets and information concerning health services in their areas, the availability of physicians experienced with the disease, and updated information on new medications. The Association awards fellowships that fund the work of medical researchers. APDA's support is dependent on contributions. APDA has 58 fundraising chapters and over 800 support groups nationwide. Additional resources include: 1) APDA National Resource for Rehabilitation; tel. 888-606-1688; e-mail rehab@bu.edu. This program provides access to a licensed physical therapist at Boston University’s Sargent College for questions about exercise, information about programs in the caller’s area, and educational materials. 2) APDA National Veteran’s Information & Referral Center; tel. 888-328-1715; e-mail susan.gulas@va.gov. This center serves as a centralized resource dedicated to supporting and improving the lives of veterans with Parkinson’s disease and their families.

Review Date: August 21, 2012

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Amyotrophic Lateral Sclerosis Association

The ALS Association has committed more than $55 million to find effective treatments and a cure for Lou Gehrig’s Disease. Our global research effort has helped increase the number of scientists working on ALS, advanced new discoveries and treatments, and has shed light on the complex genetic and environmental factors involved in ALS.

Review Date: March 12, 2013

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Bachmann-Strauss Dystonia and Parkinson Foundation

The Bachmann-Strauss Dystonia and Parkinson Foundation (BSDPF) is a nonprofit organization established to find better treatments and cures for the movement disorders dystonia and Parkinson’s disease. The goals of BSDPF are to (1) raise funds to support advanced medical research of Dystonia and Parkinson's disease, (2) educate patients and the medical community about the most recent advances in treatment and research, and (3) increase awareness of Dystonia and Parkinson's disease among the general public and the medical community. BSDPF supports research and provides treatment. BSDPF also promotes patient and medical education by providing annual patient symposia focus on Dystonia and Parkinson’s diseases.

Review Date: September 07, 2010

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Batten Disease Support and Research Association

The Batten Disease Support and Research Association (BDSRA) was formed by a group of families in the U.S. and Canada with a mission to offer emotional support, provide information and referrals, and to educate others about Batten Disease. The Association assists with the National Batten Disease Registry which is maintained at the New York State Institute for Basic Research in Developmental Disabilities. BDSRA maintains a library of information on the disease; Helping Hands Information Sheets on topics such as seizure care, tube feedings and medications. Books on grief and coping with an ill child, and informational videocassettes are available on loan. Information on medical care, financial assistance, and funding/grants is available through the Association. Services are available at all levels of participation for a membership fee.

Review Date: January 09, 2009

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Brain Injury Association of America

The Brain Injury Association of America, formerly the National Head Injury Foundation, was founded in 1980. A national non-profit organization, the association's main focus is to provide services to persons with brain injuries and their families. Our mission is to be the voice of brain injury. Through advocacy, education and research, we bring help, hope and healing to millions of individuals living with brain injury, their families and the professionals who serve them.

Review Date: May 10, 2011

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Brain Tumor Foundation for Children, Inc.

The Brain Tumor Foundation for Children provides emotional and informational support to families of children with brain tumors, educates the public and increases awareness of the disease, and raises funds to support research for a cure and for the improvement in the treatment and quality of life of the victims of pediatric brain tumor disease.

Review Date: January 07, 2009

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Children’s Brain Tumor Foundation

This national non-profit organization was founded in 1988 by a group of dedicated parents, physicians and friends to improve the treatment, quality of life and the long-term outlook for children with brain and spinal cord tumors through research, support, education, and advocacy to families and survivors. Over four million dollars have been given out for cutting edge research projects at leading medical institutions across the country. Support services include the Parent-to-Parent Network, telephone support groups, educational teleconferences and referrals to social services.

Review Date: February 09, 2009

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Dysautonomia Foundation

The Dysautonomia Foundation is an international organization created in 1951, to provide services for patients with Familial Dysautonomia, a Jewish genetic disorder. We support a Treatment and Evaluation Center at NYU Medical Hospital in NYC as well as a satellite center at Hadassah Hospital - Israel. The Foundation funds research into FD leading to a cure. It also offers support services to families including information on Treatment and Research.

Review Date: October 12, 2011

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Dysautonomia Information Network

The Dysautonomia Information Network (DINET) is a volunteer run 501(c)(3) nonprofit organization. Its mission is to raise awareness of autonomic nervous system dysfunction and to promote dysautonomia education, support and networking.

Review Date: March 20, 2013

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Dysautonomia Treatment and Evaluation Center

The Dysautonomia Treatment and Evaluation Center is maintained and supported by the Dysautonomia Foundation, a nonprofit organization founded in 1951, through its 16 local chapters throughout the United States, Canada, and Great Britain. The Center specializes in the diagnosis and treatment of familial dysautonomia, although they will respond to inquiries on other pediatric patients suspected of having a variant of this disorder or another of the congenital sensory neuropathies. While its primary goal is treatment, data on specific manifestations are accumulated and stored. The Center has a 24-hour telephone answering service and will make referrals. At present over 400 patients with familial dysautonomia are registered. The prevalence rate is one in 3,600 people of Ashkenazi Jewish extraction.

Review Date: August 26, 2008

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Dysautonomia Youth Network of America, Inc.

Founded in 1999 and professionally certified as a 501(c) (3) non-profit organization in 2002, the Dysautonomia Youth Network of America, Inc. (DYNA) is the first and only 501(c) (3) non-profit organization in existence specifically for childhood/adolescent/young adult onset dysautonomia conditions. The organization proudly serves patients, caregivers, families, physicians, researchers, educators and the public at large. Most DYNA members reside in the United States but some members hail from as far away as Australia, New Zealand, Scotland, England, South America, and Singapore. In addition to members reflecting the geographical diversity of dysautonomia conditions, they also reflect the diversity of dysautonomia conditions themselves. Members have a host of conditions such as: Post-Viral Dysautonomia, Generalized Autonomic Failure, Neurocardiogenic Syncope (NCS)/Vasovagal Syncope, Postural Orthostatic Tachycardia Syndrome (POTS), Neurally Mediated Hypotension (NMH), Post-Viral Dysautonomia, Non-Familial Dysautonomia and Multiple System Atrophy.

Review Date: February 26, 2013

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Dystonia Medical Research Foundation

The Dystonia Medical Research Foundation (DMRF) is a tax exempt organization, incorporated in 1976, created to increase awareness and understanding of dystonia among doctors and researchers and to spark innovative exploratory research projects directed at finding the causes of dystonia and related disorders. These disorders are characterized by loss of voluntary control over body posture and movement. To date, the DMRF has supported over 400 dystonia specific research grants, totalling over $20 million. The DMRF supports workshops, doctor-patient education, and research grants. The Foundation has over 60 chapters and support groups located throughout the United States and Canada and can supply referrals for local treatment. The DMRF is supported by donations from individuals, corporations, and foundations. The Foundation deals with all forms of dystonia.

Review Date: August 26, 2008

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Foundation for PSP/CBD and Related Brain Diseases, Inc.

This nonprofit organization offers information on progressive supranuclear palsy (PSP) and corticobasal degeneration (CBD) and support to persons with CBD, their families, and their caregivers. Through its online service, the Foundation also offers physicians and other health care professionals information on treatment, research into PSP and research opportunities that are available.

Review Date: August 16, 2012

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GBS/CIDP Foundation International

The GBS/CIDP Foundation International, founded in 1980, provides support for patients and families confronted with Guillain-Barre Syndrome and chronic inflammatory demyelinating polyneuropathy. Both are disorders involving peripheral nerves that present as severe muscle weakness, often paralysis. The GBS/CIDP Foundation International seeks to improve the quality of life for individuals and families worldwide affected by GBS, CIDP and variants by 1) providing a network for all patients, their caregivers and families so that GBS or CIDP patients can depend on the Foundation for support, and reliable up-to-date information, 2) providing public and professional educational programs worldwide designed to heighten awareness and improve the understanding and treatment of GBS, CIDP and variants, 3) expanding the Foundation’s role in sponsoring research and engaging in patient advocacy.

Review Date: June 12, 2012

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Guardians of Hydrocephalus

The Guardians of Hydrocephalus Research Foundation (GHRF) is a non-profit group dedicated to research into the cause and treatment of hydrocephalus. The Foundation operates a laboratory in the Department of Neurology at New York University Medical Center, in which information from clinical and research facilities is integrated to provide for better diagnosis and treatment of hydrocephalus, a frequently-occurring congenital disorder that can also occur shortly after birth. Hydrocephalus accounts for a large proportion of adult patients with a diagnosis of dementia.

Review Date: November 21, 2008

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Huntington's Disease Society of America

HDSA is a 501(c)3 not-for-profit organization recognized as a charity in good standing by the IRS(EIN: 133349872) and meets all the required high Standards of Excellence of the BBB Wise Giving Alliance. HDSA currently supports more than 40 scientists and 16 major HD laboratories in North America and around the world through HDSA Coalition for the Cure with annual grants which range from $40,000 to $100,000 for HD investigations. Twenty-one HDSA Centers of Excellence at locations in major hospitals and university medical centers are supported by HDSA across the continental United States. The national office also produces and distributes, free of charge, publications and informational materials on HD and maintains a toll-free information hotline to assist physicians, patients and family members. Through 12 HDSA regions, 38 volunteer-based chapters and affiliates, 200+ support groups, HDSA reaches out across the nation to offer HD patients and their families guidance, encouragement, resource information and leadership opportunities at HDSA events, meetings and seminars.

Review Date: May 26, 2011

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Hydrocephalus Association

Founded in 1983, the Hydrocephalus Association is a national non-profit organization. Our mission is to eliminate the challenges of hydrocephalus by stimulating innovative research and providing support, education and advocacy for individuals, families and professionals dealing with the complex issue of the condition. Families are empowered with educational materials, informed about the latest research, and have access to quality health care. The association advocates for increased research and funding to advance understanding, improve diagnosis and treatment, and find a cure.

Review Date: February 14, 2013

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International Essential Tremor Foundation

The International Essential Tremor Foundation (IETF) is an international nonprofit organization; its priorities are patient services and education, public awareness of tremor disorders, and support of research in tremor disorders. IETF has begun a program of educational symposia for patients and families. These take the format of experts addressing lay audiences in the field of tremor research and clinical care. Funds raised over operating costs are used to support neurologic research.

Review Date: May 24, 2012

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Joubert Syndrome Foundation & Related Disorders Foundation

Joubert Syndrome is a rare genetic disorder characterized by decreased muscle tone, difficulties with coordination, abnormal eye movements, abnormal breathing pattern and cognitive impairment. These issues are due to abnormal brain development, resulting in decreased size of the cerebellar vermis and other brain abnormalities that appear as the "molar tooth sign" on a brain MRI. Although rare, several hundred individuals with Joubert Syndrome have been reported in the medical literature. Mutations in at least 10 genes cause Joubert Syndrome, accounting for ~50% of patients. Subsets of individuals with Joubert Syndrome can also have polydactyly (extra fingers or toes), as well as retinal, kidney and liver disease requiring medical intervention. Joubert Syndrome is one of a growing group of disorders called "ciliopathies," caused by dysfunction of a part of the cell called the cilium. The cilium functions as an antenna for many cell types, allowing cells to communicate with each other and sense their environment during the development and function of many organs. In fact, cilia are required to sense light in the eye, odors in the nose and fluid flow in the kidneys and liver. Disruption of cilium function likely explains the incidence of eye, kidney and liver problems in individuals with Joubert Syndrome.

Review Date: October 26, 2011

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Les Turner Amyotrophic Lateral Sclerosis Foundation

The Les Turner Amyotrophic Lateral Sclerosis (ALS) Foundation is a nonprofit organization that offers support to patients and families living with the day-to-day difficulties associated with ALS--also known as Lou Gehrig's disease. Services available include the Lois Insolia ALS Center, an out-patient clinic with a multi-disciplinary team, at Northwestern Memorial Hospital, Chicago, IL, a visiting nurse program; equipment and communication system banks; educational materials and programs; and support groups. The Foundation also supports scientific research on ALS; currently this research is being conducted at the Les Turner ALS Research Laboratory at Northwestern University Feinberg School of Medicine, where scientists are working to discover the cause of the disease and ultimately a cure. These experts in the field of ALS help both professionals and patients keep current with ALS research and patient care.

Review Date: August 27, 2008

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Multiple Sclerosis Association of America

The Multiple Sclerosis Association of America (MSAA) is a national nonprofit organization dedicated to enriching the quality of life for everyone affected by multiple sclerosis. MSAA provides ongoing support and direct services to these individuals with MS and the people close to them. MSAA also serves to promote greater understanding of the needs and challenges of those who face physical obstacles. In addition to a variety of programs and services - such as consultations, equipment distribution, MRI diagnostic funding, and public awareness campaigns - MSAA also provides valuable information through its magazine and other literature.

Review Date: January 03, 2011

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Multiple Sclerosis Foundation, Inc.

The Multiple Sclerosis Foundation, Inc. (MSF) provides information, referral and support services to professionals, those diagnosed with multiple sclerosis, family members and friends. The mission of the MSF is to provide nationally accessible programs and support services to those persons affected by MS to help them maintain their health, safety, self-sufficiency, and personal well-being; and to heighten public awareness of multiple sclerosis in order to elicit financial support for the MSF's programs and services and promote understanding for those diagnosed with the illness.

Review Date: August 30, 2012

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Muscular Dystrophy Association

The Muscular Dystrophy Association, (MDA) is a nonprofit health agency dedicated to curing muscular dystrophy, ALS and related diseases by funding worldwide research. The Association also provides comprehensive health care and support services, advocacy and education. MDA has more than 200 offices across the country, sponsors some 200 hospital-affiliated clinics and supports more than 330 research projects around the world.

Review Date: May 24, 2011

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Myasthenia Gravis Foundation of America, Inc.

The mission of Myasthenia Gravis Foundation of America, Inc. is to finding a cure for myasthenia gravis and closely related disorders, to improve treatment options and providing information and support to people with myasthenia gravis through research, education, community programs and advocacy. Myasthenia gravis is a chronic neuromuscular, autoimmune disorder that causes varying degrees of weakness involving the voluntary muscles of the body, particularly those that control eye movements, eyelids, chewing, swallowing, coughing, facial expression, breathing and movements of the arms and legs. At present, the cause of myasthenia gravis is unknown, and there is no cure.

Review Date: December 11, 2008

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National Niemann-Pick Disease Foundation, Inc. (NNPDF)

The National Niemann-Pick Disease Foundation supports and promotes research to find treatments and a cure for all types of Niemann-Pick Disease, and provides support services for individuals and families affected by NPD. A comprehensive Web site, brochures, posters, newsletters, Facebook group, listserv groups, blog, etc., are available.

Review Date: August 27, 2008

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National Parkinson Foundation, Inc.

For over half a century, the National Parkinson Foundation (NPF) has focused on meeting the needs in the care and treatment of people with Parkinson’s disease (PD). Since 1982, NPF has funded more than $155 million in care, research and support services. NPF’s mission is to improve the quality of care through research, education and outreach.

Review Date: October 26, 2011

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National Spasmodic Torticollis Association

The National Spasmodic Torticollis Association (NSTA) is a non profit organization formed to provide information and support to people with Spasmodic Torticollis (ST), a painful and debilitating neurological condition that affects over 150,000 people in the United States. Caused by a dysfunction in the brain, ST causes sustained or intermittent involuntary contractions of muscles around the neck, causing the head to turn or lean to one side, or forward or backward. The Association has an outreach program designed to bring ST patients together and to make the medical profession and general public more aware of the disorder. Chapters are located nationwide.

Review Date: October 13, 2010

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National Tourette Syndrome Association

The National Tourette Syndrome Association (TSA) was established to support research into Tourette Syndrome and to provide educational materials relating to the disorder. It helps patients who have been undiagnosed and misdiagnosed by publicizing the symptomatology of the disease; publishes and distributes medical and nonmedical information via booklets and other media; and regularly schedules meetings of the membership to exchange information and learn about new developments.

Review Date: July 15, 2009

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Parkinson's Disease Foundation- (PDF)

The Parkinson's Disease Foundation (PDF), founded in 1957, is a leading national presence in Parkinson’s disease research, patient education and public advocacy. PDF is working for the nearly one million people in the US living with Parkinson’s by funding promising scientific research and supporting people with Parkinson’s, their families and caregivers through educational programs and support services.

Review Date: January 24, 2012

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Post-Polio Health International

The mission of Post-Polio Health International, including International Ventilator Users Network, is to enhance the lives and independence of polio survivors and home mechanical ventilator users by promoting education, networking, and advocacy among these individuals and healthcare providers. Audiences addressed include consumers, professionals, survivors of polio, rehabilitation health professionals, neurologists and pulmonologists. Requests for information may be received by telephone, mail, e-mail and in person.

Review Date: February 26, 2013

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Reflex Sympathetic Dystrophy Syndrome Association

The Reflex Sympathetic Dystrophy Syndrome Association (RSDSA) is a nonprofit professional and consumer organization founded in 1984 to support research into the cause, treatment, and cure of reflex sympathetic dystrophy syndrome, also known as Complex Reginal Pain Syndrome (CRPS), a multi-symptom syndrome usually affecting one or more of the extremities, although any part of the body may be affected. The only common symptom in all patients is pain. RSDSA funds research into the cause and cure of this syndrome, helps organize support groups, promote awareness among health professionals, and develop educational forums and conventions.

Review Date: August 29, 2011

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Restless Legs Syndrome Foundation

Restless Legs Syndrome Foundation is a non-profit organization providing the latest information about RLS. The goals of the Foundation are to increase awareness, improve treatments, and through research, find a cure for RLS, a condition which severely affects the lives of millions of individuals. Incorporated since 1992.

Review Date: September 19, 2011

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Sotos Syndrome Support Association

The Sotos Syndrome Support Association (SSSA) was organized in 1988 to provide a support network for families and individuals affected by the syndrome. Sotos syndrome, also known as cerebral gigantism, is a neurological brain-based disorder resulting in physical and mental developmental delays in children. The goals of the SSSA are to provide a social support environment for families and individuals with Sotos syndrome; increase public awareness and education about the disorder; and provide opportunites for professionals working with affected individuals to collect and share data for research. The SSSA has members across the United States, Canada and Great Britain, and sponsors an annual conference.

Review Date: August 13, 2010

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The Brain Aneurysm Foundation

The Brain Aneurysm Foundation is the nation’s only nonprofit organization solely dedicated to providing critical awareness, education, support and research funding to reduce the incidence of brain aneurysms. The Foundation’s mission is to provide support and educational materials to the medical community, the newly diagnosed, survivors, family members, friends and the general public regarding the facts, treatment options, and recovery process for brain aneurysms.

Review Date: November 15, 2011

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TNA The Facial Pain Association

The Facial Pain Association (formerly The Trigeminal Neuralgia Association (TNA)) is a 501(c)(3) non-profit voluntary health organization, serving patients worldwide who suffer from neuropathic face pain, including Trigeminal Neuralgia (TN), their families, and the physicians, dentists and healthcare providers who treat them. TNA was founded in 1990 by a group of TN patients and their spouses with the mission to improve the quality of life of TN patients through programs that empower patients to become knowledgeable about their condition and treatment options, that aid patients with chronic pain, that educate non-specialists on matters of diagnosis and treatment, and that encourage relevant medical research.

Review Date: September 28, 2011

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