Links

Recommended Links

American Stroke Association
Enter your zip code in the search window and find local stroke resources.

Young Survivor's Support Group (Peer Run) 
For any stoke survivor 60 years or younger. Meetings are held twice a month. For more info contact Roni at (203) 257-5533 or email [email protected].

American Society of Neurorehabilitation
The Resources page contains many links to useful health care sites.

American Academy of Neurology 
The American Academy of Neurology (AAN) and the American Academy of Neurology Foundation (AAN Foundation) can help you find the answers to questions surrounding brain diseases.

 

Links by Condition

ADHD
ALS
Alzheimer's
Aphasia
Ataxia
Autism
Bell's Palsy
Benign Essential Belpharospasm
Brain Tumor
Brain Injury
Cerebral Palsy
Concussion
Dystonia
Epilepsy
Guillain-Barre
Headache/Migraine
Huntington's Disease
Lyme Disease
Multiple Sclerosis
Muscular Dystrophy
Myasthenia Gravis
Neurofibromatosis
Neuropathy
Obsessive-Compulsive Disorder
Pain Management
Parkinson's Disease
Progressive Supranuclear Palsy
Restless Leg Syndrome
Sleep Disorders
Spasmodic Dysphonia/ Spasmodic Torticollis
Stroke
Tinnitus
Tremor
Trigeminal Neuralgia
Tourette Syndrome
General Neurology
Clinical Trials

 

Attention Deficit/Hyperactivity Disorder

Children and Adults with Attention-Deficit/Hyperactivity Disorder (CHADD)
8181 Professional Place
Suite 221
Landover, MD 20785
Phone: 301.306.7070
Email: [email protected]
CHADD is a non-profit parent-based organization formed to better the lives of individuals with attention deficit disorder and those who care for them.

ALS

ALS Association
27001 Agoura Road
Suite 150
Calabasas Hills, CA 91301-5104 
Phone: 888.949.2577
Email: [email protected] 
The ALS Association is the only national not-for-profit voluntary health organization dedicated solely to the fight against amyotrophic lateral sclerosis (often called Lou Gehrig's disease). 

 

Alzheimer's Disease

Alzheimer Society
20 Eglinton Avenue W.
Suite 1200
Toronto, Ontario M4R 1K8
Canada
Phone: 416.488.8772
Toll Free: 1.800.616.8816 (valid only in Canada)
Email: [email protected] 
Here you'll find information on the Alzheimer Society, the disease, care, research, news, events, and more.

Alzheimer's Association
National Headquarters 
919 N. Michigan Avenue
Suite 1000 
Chicago, IL 60611-1676
Phone: 312.335.8700
Toll Free: 800.272.3900
Dedicated to researching the prevention, cures, and treatments of Alzheimer's disease nationwide.

Alzheimer's Disease Education and Referral (ADEAR Center)
P.O. Box 8250
Silver Springs, MD 20907-8250
Phone: 800.438.4380
Email: [email protected]
This site provides information on Alzheimer's disease research, diagnosis, treatment, drugs, clinical trials, and Federal Government programs and resources. The ADEAR Center is a service of theNational Institute on Aging (NIA). The NIA is one of the National Institutes of Health under the U.S. Department of Health and Human Services.

Family Caregiver Alliance
690 Market Street
Suite 600
San Francisco, CA 94104
Phone: 415.434.3388
Fax: 415.434.3508
Email: [email protected]
Welcome to the website for Family Caregiver Alliance, the premier support organization for caregivers. Here you'll find specialized information on Alzheimer's disease, stroke, traumatic brain injury, Parkinson's disease, ALS, and other disorders and long-term care concerns. Their site has wonderful features for families, caregivers, professionals, policy makers, and the media.

back to top ]

Aphasia

National Aphasia Association
156 5th Avenue
Suite 707
New York, NY 10010
Phone: 800.922.4622
The National Aphasia Association is an organization dedicated to promoting the care, welfare, and rehabilitation of those with aphasia through public education and support of research. The mission of the NAA is to stimulate the development and utilization of resources to help meet the needs of people with aphasia and their families. 

 

Ataxia

National Ataxia Foundation (NFA)
2600 Frenbrook Lane
Suite 119
Minneapolis, MN 55447
Phone: 612-553-0020
Email: [email protected]

 

Autism

Autism Research Institute
4182 Adams Avenue
San Diego, Ca 92116
Phone: 916.281.7165

 

Bell's Palsy

American Academy of Otolaryngology- Head and Neck Surgery
One Prince Street
Alexandria, VA 22314-3357
Phone: 703.836.4444
Email: [email protected]
Offers lists of patient leaflets and /or geographical list of physicians.

 

Benign Essential Blepharospasm

Benign Essential Belpharospasm Research Foundation, Inc. (BEBRF)
P.O. Box 12468
Beaumont, TX 77726-2468
Phone: 409.832.0890
Email: [email protected]
Referral services, local chapters, support groups, and audio/visual materials.

 

Brain Tumor

American Brain Tumor Association (ABTA)
Suite 146
2720 River Road
Des Plaines, IL 60018
Phone: 847.827.9910
Toll Free: 1.800.886.ABTA (1.800.886.2282)
Email: [email protected]
ABTA funds brain tumor research and provides information to patients to make educated decisions about their health care. The ABTA offers printed materials about research and treatment of brain tumors, and provides listings of physicians, treatment facilities, and support groups throughout the country. A limited selection of Spanish-language publications is available.

National Brain Tumor Foundation
414 Thirteenth Street
Suite 700
Oakland, CA 94612-2603
Phone: 510.839.9777
Toll Free: 1.800.934.CURE (2873)
Fax: 510.839.9779
Email: [email protected]
NBTF is a national not-for-profit health organization dedicated to providing information and support for brain tumor patients, family members, and healthcare professionals, while supporting innovative research in better treatment options and a cure for brain tumors.

Children's Brain Tumor Foundation
274 Madison Avenue
Suite 1301
New York, NY 10016
Phone: 212.448.9494
A resource guide for parents of children with brain and spinal cord tumors.

Brain Injury

Acquired Brain Injury/Traumatic Brain Injury Information Project
Welcome to the ABI/TBI Information Project. In conjunction with the TBI- SPRT E-Mail List and the Sasquatch ABI/TBI Gopher, this area is dedicated to providing information on brain injury without preference to any particular person, thought, theory, or belief. At this point in time it exists because of the work of Len Burns, owner of the St. John's Traumatic Brain Injury Support list (TBI-SPRT), Dena Taylor, Executive Director of The Perspectives Network and Jeff Northon, site co-administrator.

Brain Injury Association Inc.
105 North Alfred Street
Alexandria, VA 22314
Helpline: 800.444.6443
Phone: 703.236.6000
Fax: 703.236.6001
To find your nearest Brain Injury Association State Office or Affiliate visit: www.biausa.org/States.htm
The mission of the Brain Injury Association is to create a better future through brain injury prevention, research, education, and advocacy. Their site offers listings of publications, conferences, programs, support groups, and more. They also have a site dedicated to children.

Brain Injury Center
4229 Bardstown Road
Suite 330
Louisville, KY 40218
Phone: 502.493.0609
Toll Free: 800.592.1117
Fax: 502.499.8995
Complete information on brain injuries, whether they're caused by accidents, stroke, infection, or tumors. The resources here are intended for laypeople.

Brain Trauma Foundation 
523 East 72nd Street
New York, NY 10021
Phone: 212.772.0608
Fax: 212.772.0357
Email: [email protected]

National Aphasia Association
156 5th Avenue
Suite 707
New York, NY 10010
Phone: 800.922.4622
The National Aphasia Association is an organization dedicated to promoting the care, welfare, and rehabilitation of those with aphasia through public education and support of research. The mission of the NAA is to stimulate the development and utilization of resources to help meet the needs of people with aphasia and their families.

back to top ]

 

Cerebral Palsy

The Arc of the United States
(formerly Association for Retarded Citizens of the United States) 
500 East Border Street
Suite 300
Arlington, TX 76010
Voice: 817.261.6003
Fax: 817.277.3491
TDD: 817.277.0553
Email: [email protected]
The Arc is the country's largest voluntary organization committed to the welfare of all children and adults with mental retardation and their families.

United States Cerebral Palsy Athletic Association Home
25 W. Independence Way 
Kingston, RI 02881
Email: [email protected] 
Phone: 401.874.7465
Our overall purpose is designed to provide both individualized sports training and competitive opportunities for athletes with cerebral palsy, or other related challenges, such as traumatic brain injuries or strokes. 

 

Dystonia

Dystonia Medical Research Foundation (DMRF)
One East Wacker Drive
Suite 2430
Chicago, IL 60601-2001
Toll Free: 800.377.DYST
Phone: 312.755.0198
Email: dystonia @dystonia-foundation.org

Epilepsy

The Epilepsy Foundation®
(formerly the Epilepsy Foundation of America)
4351 Garden City Drive
Landover, MD 20785
Local Phone: 301.459.3700
Toll Free: 800.EFA.1000
Fax: 301.577.4941
TTY: 800.332.2070
Email: [email protected]
This is a national organization that works for people affected by seizures through research, education, advocacy, and service. 

 

Guillain-Barre Syndrome

Guillain-Barre Syndrome Foundation International
P.O. Box 262
Wynnewood, PA 19096
Phone: 610.667.0131
Fax: 610.667.7036
Email: [email protected]

  • Available services include the following:
  • Visits to patients by recovered persons
  • Comprehensive booklet, "GBS, An Overview for the Layperson"
  • Poster, announcing services
  • Patient assistance by local chapters
  • List of chapters worldwide
  • Newsletter
  • Research funding
  • International Educational Symposia for the medical community and general public

 

Headache/Migraine

American Council for Headache Education (ACHE) 
19 Mantua Road
Mt. Royal, NJ 08061
Phone: 856.423.0258
Fax: 856.423.0082
Email: [email protected]
The American Council for Headache Education (ACHE) is a nonprofit patient-health professional partnership dedicated to advancing the treatment and management of headache. Their goals are to empower headache sufferers through education, and to support them by educating their families, employers, and the public in general. We advocate individualized treatments, which combine the best of traditional medicine, alternative medicine, drug, and non-drug therapies.

National Headache Foundation
428 W. St. James Place
2nd Floor
Chicago, IL 60614-2750
Toll Free: 1.888.NHF.5552
Phone: 312.388.6399
The World Wide Web Headache Information Center offers membership availability, topic sheets for specific headache conditions, a list of educational materials for purchase, information about headache support groups, sample articles from the NHF Head Lines, and award-winning bi-monthly newsletter.

back to top ]

 

Huntington's Disease

Family Caregiver Alliance
690 Market Street
Suite 600
San Francisco, CA 94104
Phone: 415.434.3388
Fax: 415.434.3508
Email: [email protected]
Welcome to the website for Family Caregiver Alliance, the premier support organization for caregivers. Here you'll find specialized information on Alzheimer's disease, stroke, traumatic brain injury, Parkinson's disease, ALS, and other disorders and long-term care concerns. Their site has wonderful features for families, caregivers, professionals, policy makers, and the media.

Huntington's Disease Society of America 
505 Eighth Avenue
Suite 902
New York, NY 10018
Phone: 212.242.1968
Toll Free HD Information Line: 1.800.345.HDSA
Email: [email protected]
HDSA's mission is to: 

  • Promote and support research to find a cure for HD
  • Help those affected by the disease and their families
  • Educate the public and health care professionals about HD

 

Lyme Disease

American Lyme Disease Foundation
Mill Pond Offices
293 Route 100
Somers, NY 10589
Tel: 914.277.6970
Fax: 914.277.6974
Email: [email protected]

Lyme Disease Foundation, Inc.
One Financial Plaza 18th Floor
Hartford, CT 06103
Tel: 860.525.2000
Fax: 860.525.TICK
24-Hour Hotline: 800.886.LYME
Email: [email protected]

Lyme Disease: A Patients Guide, American College of Physicians American Society of Internal Medicine

back to top ]

 

Multiple Sclerosis

Family Caregiver Alliance
690 Market Street
Suite 600
San Francisco, CA 94104
Phone: 415.434.3388
Fax: 415.434.3508
Email: [email protected]
Welcome to the website for Family Caregiver Alliance, the premier support organization for caregivers. Here you'll find specialized information on Alzheimer's disease, stroke, traumatic brain injury, Parkinson's disease, ALS, and other disorders and long-term care concerns. Their site has wonderful features for families, caregivers, professionals, policy makers, and the media.

Multiple Sclerosis Association of America (MSAA)
National Headquarters
706 Haddonfield Road
Cherry Hill, NJ 08002
Toll Free: 1.800.LEARN.MS
Phone: 609.488.4500
The MSAA offers an educational video for newly diagnosed individuals.

National Multiple Sclerosis Society 
733 Third Avenue
New York, NY 10017
Fax: 212.986.7981
Phone: 212.476.0426
Toll Free: 800.344.4867 (FIGHT MS)
Email: [email protected]
The National Multiple Sclerosis Society is dedicated to ending the devastating effects of Multiple Sclerosis (MS). Acquire news updates, information about the organization, local resources, and MS links. 

NMSS Chapter Staff:

Lynette Coleman
Associate Vice President, Programs and Services
Email: [email protected]
Tel: 860.714.2300 ext. 238

Margaret Andrews
Chapter Programs Director
Tel: 860.714.2300 ext. 326
Email: [email protected]

Susan Raimondo
Senior Director, Advocacy & Programs
Email: [email protected]
Tel: 860.714.2300 ext. 229

 

Muscular Dystrophy

Muscular Dystrophy Association
3300 East Sunrise Drive
Tucson, AZ 85718
Toll Free: 800.572.1717
The Muscular Dystrophy Association is the source for news and information about neuromuscular diseases, MDA research and services for adults and children with neuromuscular diseases and their families. 

Myasthenia Gravis

Myasthenia Gravis Foundation of America (MGFA)
1821 University Ave W
Suite S256
St. Paul, MN 55104-2897
Phone: 800.541.5454 or 651.917.6256
Fax: 651.917.1835
Email: [email protected]
This national volunteer health agency seeks to find a cure for myasthenia gravis and related disorders of the neuromuscular junction and to help people affected by them. Their site provides news, research updates, patient-service information, and links.

Neurofibromatosis

Neurofibromatosis, Inc.
8855 Annapolis Road
Suite 110
Lanham, MD 20706-2924
Toll Free: 800.942.6825
Phone: 301.577.8984
Fax: 301.577.0016
Email: [email protected]
NF, Inc. is an organization made up of independent state and regional chapters, providing support and services to NF families.

back to top ]

 

Neuropathy

Charcot-Marie-Tooth Association
2700 Chestnut Street 
Chester, PA 19013-4867 
Phone: 610.499.9264
610.499.9265
Toll Free: 1.800.606.CMTA (2682)
Fax: 610.499.9267
Email: [email protected]
The CMTA is a nonprofit organization founded in 1983 whose goals are patient support, public education, promotion of research, and ultimately the treatment and cure of CMT.

The Neuropathy Association
60 E. 42nd Street
Suite 942 
New York, NY 10165
Phone: 212.692.0662
Email: [email protected]
The Neuropathy Association is a public, nonprofit organization which was established by people with neuropathy and their families or friends to help those who suffer from disorders that affect the peripheral nerves. 

Obsessive-Compulsive Disorder

Obsessive-Compulsive Foundation (OCF)
337 Notch Hill Road
North Branford, CT 06471
Phone: 203.315.2190
Fax: 203.315.2196
Email: [email protected] 
OCF funds research, conducts annual membership conferences, publishes a bi-monthly newsletters, provides a free inquiry packet with information on treatment providers, support groups, and other materials. 

 

Pain Management

National Foundation for the Treatment of Pain
1330 Skyline Drive
Suite 21
Monterey, CA 93940
Phone: 831.655.8812
Fax: 831.655.2823 
The National Foundation for the Treatment of Pain is a not-for-profit organization dedicated to providing support for patients who are suffering from intractable pain, their families, friends and the physicians who treat them.

American Chronic Pain Association, Inc. (ACPA)
P.O. Box 850
Rocklin, CA 95677
Phone: 916.632.0922
Fax: 916.632.3208
Email: [email protected]
ACPA Mission Statement:
* To facilitate peer support and education for individuals with chronic pain and their families so that these individuals may live more fully in spite of their pain.
* To raise awareness about issues of living with chronic pain among the health care community, policy makers, and the public at large. 

 

Parkinson's Disease

American Parkinson Disease Association
1250 Hylan Boulevard
Suite 4B
Staten Island, NY 10305
Toll Free: 800.223.2732
Phone: 718.981.8001
Email: [email protected]

National Parkinson Foundation, Inc.
1501 NW 9th Avenue
Bob Hope Road
Miami, FL 33136-1494
Toll Free: 800.327.4545
Fax: 305.548.4403
Email: [email protected]
The organization supports research; conducts clinical trials; and provides physical, occupational, speech, and neuropsychological therapies. Learn about Parkinson's disease-related news and events. The online library also holds publications and articles.

Parkinson's Disease Foundation
710 West 168th Street
New York, NY 10032-9982
Toll Free: 800.457.6676
Phone: 212.923.4700
Email: inf[email protected]
Educational Office (312)733-1893
The Foundation provides information about Parkinson's disease itself as well as related organizations, research centers, and events. You can also read the latest Parkinson's news or join the online email list.

Parkinson's Action Network
840 Third Street
Santa Rosa, CA 95404
Toll Free: 800.850.4726
Phone: 707.544.1994
Fax: 707.544.2363
Email: [email protected]
The Parkinson's Action Network was founded in 1991 with a mission to provide a voice for the Parkinson's community. Since that time, the Network's central objective continues to be to promote a level of research support sufficient to produce effective treatments and a cure. 

Progressive Supranuclear Palsy

Society for Progressive Supranuclear Palsy, Inc. (SPSP)
Suite 515, Woodholme Medical Building
1838 Greene Tree Road
Baltimore, MD 21208
800.457.4777
Fax: 410.486.4283
Email: [email protected]
The goal of this website is to bring current information on progressive supranuclear palsy (PSP) to persons with PSP, their families, and their caregivers. 

Restless Leg Syndrome

Restless Legs Syndrome Foundation
4410 19th Street NW
Suite 201
Rochester, MN 55901-6635
Phone: 507.287.6465
Email: [email protected] 
The Restless Legs Syndrome Foundation is a nonprofit 501(c)(3) agency that provides information about RLS; helps develop support groups; supports research to find better treatments and, eventually, a definitive cure; educates physicians and patients about RLS; and publishes a quarterly newsletter known as NightWalkers.

back to top ]

 

Sleep Disorders

American Academy of Sleep Medicine
6301 Bandel Road NW
Suite 101
Rochester, MN 55901
Phone: 507.287.6006
Fax: 507.287.6008
Email: [email protected]

American Sleep Apnea Association
1424 K Street NW
Suite 302
Washington, DC 20005
Phone: 202.293.3650
Fax: 202.293.3656
Email: [email protected]
The American Sleep Apnea Association is dedicated to reducing injury, disability, and death from sleep apnea