This list contains organizations that provide information on brain diseases and disorders to the general public.
This guide is derived from data included in a brochure printed by The Dana Alliance for Brain Initiatives called Brain Connections: Your Source Guide to Information on Brain Diseases and Disorders. Please contact them if you wish to order paper versions of their brochure.
Since the original document does not include information about online resources, this is a list concurrently...adding new pointers to new official organization webservers and email addresses as we find them. Check this page for updates!
- GENERAL NUMBERS
- AIDS DEMENTIA
- ALCOHOL AND DRUG ABUSE
- ALZHEIMER'S DISEASE
- AMYTROPHIC LATERAL SCLEROSIS
- ANXIETY DISORDERS
- ATAXIA
- ATTENTION DEFICIT HYPERACTIVITY DISORDER (ADHD)
- AUTISM
- BATTEN'S DISEASE
- BIRTH DEFECTS
- BLINDNESS/VISION IMPAIRMENT
- BRAIN TUMOR
- CEREBRAL PALSY
- CHARCOT-MARIE-TOOTH DISEASE
- DEAFNESS
- DEPRESSION/ MANIC DEPRESSION
- DIZZINESS
- DYSTONIA
- EATING DISORDERS
- EPILEPSY
- GENETIC DISORDERS
- GUILLAIN-BARRE SYNDROME
- HEADACHE
- HEAD INJURY
- HUNTINGTON'S DISEASE
- HYDROCEPHALUS
- LEARNING DISABILITIES/DYSLEXIA
- LEUKODYSTROPHY
- MENTAL RETARDATION
- MULTIPLE SCLEROSIS
- MUSCULAR DYSTROPHY
- MYASTHENIA GRAVIS
- MYOCLONUS
- NEUROFIBROMATOSIS
- OBSESSIVE COMPULSIVE DISORDER (OCD)
- PAIN (CHRONIC)
- PARKINSON'S DISEASE
- POST-POLIO SYNDROME
- POST TRAUMATIC STRESS DISORDER
- SEASONAL AFFECTIVE DISORDER (SAD)
- SHINGLES/CHICKEN POX
- SLEEP DISORDERS
- SPINA BIFIDA
- SPINAL CORD INJURY
- STROKE
- SYRINGOMYELIA
- TOURETTE SYNDROME
- TREMOR
- TUBEROUS SCLEROSIS
American Association of Retired Persons (AARP) Social Outreach and Support
601 E St., NW
Washington, DC 20049
(202) 434-2260
Webserver: none
Email: AARP2@aol.com,JEVA61B@prodigy.com,74777,1162@compuserve.com
National Alliance for the Mentally Ill
200 N. Glebe Road, Ste. 1015
Arlington, VA 22203-3754
(800) 950-NAMI
Webserver:http://www.cais.com/vikings/nami/index.html
Email:NAMIofc@aol.com
National Easter Seal Society
230 W. Monroe St., Ste. 1800
Chicago, IL 60606
(312) 726-6200
Webserver: http://www.seals.com/
Email:webmaster@seals.com
National Information Center for Children and Youth with Disabilities
P.O. Box 1492
Washington, DC 20013
(800) 695-0285
Webserver: (gopher) gopher://aed.aed.org:70/11/.disability/.nichcy
Email:nichcy@aed.org
National Institutes of Health
9000 Rockville Pike
Bldg. 31, Room 2B10
Bethesda, MD 20892
(301) 496-1766
Webserver: http://www.nih.gov/
Email: nihinfo@od31tm1.od.nih.gov
National Institute of Mental Health
5600 Fishers Lane, Room 7C-02
Rockville, MD 20857
(301) 443-4513
Webserver: http://www.nimh.nih.gov/
Email: nimhinfo@nih.gov
National Institute of Neurological Disorders and Stroke
31 Center Drive MSC 2540
Building 31, Room 8A16
Bethesda, MD 20892-2540
(800) 352-9424
Webserver: http://www.nih.gov/ninds/
Email: NINDSwebmaster@nih.gov
National Mental Health Association
Information Center; Code L013
1021 Prince St.
Alexandria, VA 22314-2971
(800) 969-NMHA
Webserver: http://www.wildhack.com/nmha/index.html
Email: none
National Organization for Rare Disorders (NORD)
P.O. Box 8923
New Fairfield, CT 06812-8923
(800) 999-6673
Webserver: http://www.w2.com/nord1.html
Email: http://www.w2.com/nordmail.html
Society for Neuroscience
11 Dupont Circle, NW
Ste. 500
Washington, DC 20036
(202) 462-6688
Webserver: http://www.sfn.org/
Email: webmaster@www.sfn.org
CDC National AIDS Clearinghouse
P.O. Box 6003
Rockville, MD 20849-6003
(800) 458-5231
Webserver:http://www.cdcnac.org/
Email: aidsinfo@cdcnac.aspensys.com
National Clearinghouse for Alcohol and Drug Information
P.O. Box 2345
Rockville, MD 20847-2345
(800) 729-6686
Webserver: http://www.health.org/
Email: webmaster@health.org
Alzheimer's Association
919 N. Michigan Ave, Ste. 1000
Chicago, IL 60611-1676
(800) 272-3900
Webserver: http://www.alz.org/
Email: greenfld@alz.org, webmaster@alz.org
Alzheimer's Disease Education and Referral Center
P.O. Box 8250
Silver Spring, MD 20907-8250
(800) 438-4380
Webserver: http://www.alzheimers.org/adear
Email: adear@alzheimers.org
French Foundation for Alzheimer Research
11620 Wilshire Blvd., Ste. 820
Los Angeles, CA 90025
(800) 477-2243
Webserver: none
Email: none
The ALS Association
21021 Ventura Blvd., Ste. 321
Woodland Hills, CA 91364-2206
(800) 782-4747
Webserver: http://www.alsa.org/
Email: EAJC27B@prodigy.com
Panic Disorder Education Program
National Institute of Mental Health
5600 Fishers Lane, Room 7C-02
Rockville, MD 20857 (800) 64-PANIC
Webserver: none
Email: none
National Ataxia Foundation
15500 Wayzata Blvd., # 750
Wayzata, MN 55391
Phone: (612) 473-7666
Fax: (612) 473-9289
Webserver: http://www.ataxia.org Email: naf@mr.net
ATTENTION DEFICIT HYPERACTIVITY DISORDER (ADHD)
Children and Adults with Attention Deficit Disorders (CHADD)
499 NW 70th Ave., Ste. 1011
Plantation, FL 33317
(305) 587-3700
Webserver: http://www.chadd.org/
Email: none
Autism Society of America
7910 Woodmount Ave., Ste. 650
Bethesda, MD 20814-3015
(800) 3-AUTISM
Webserver: http://www.autism-society.org/
Email: none
Center for Outreach and Services for the Autism Community
1450 Parkside Ave., Ste. 22
Ewing, NJ 08638
(609) 883-8100
Webserver: none
Email: none
Batten's Disease Support and Research Association
2600 Parsons Ave.
Columbus, OH 43207
(800) 448-4570
Webserver: http://www.infolane.com/bdsra
Email: bdsra1@aol.com
Children's Brain Disease Foundation
350 Parnassus Ave., Ste. 900
San Francisco, CA 94117
(415) 565-6259
Webserver: none
Email: none
March of Dimes Birth Defects Foundation
1275 Mamaroneck Ave.
White Plains, NY 10605
(914) 428-7100
Webserver: http://www.modimes.org/
Email: none
Helen Keller International World Headquarters 90 Washington St.
15th Floor
New York, NY 10006
(212) 943-0890
Webserver: none
Email: none
The Lighthouse Inc.
111 East 59th St.
New York, NY 10022
(800) 334-5497
Webserver:
Email:
Prevent Blindness America
500 East Remington Road
Schaumburg, IL 60173-5611
(800) 331-2020
Webserver:
Email:
Research to Prevent Blindness, Inc.
645 Madison Ave.
21st Floor
New York, NY 10022-1010
(212) 752-4333
(800) 621-0026 (outside NY)
Webserver:
Email:
American Brain Tumor Association
2720 River Road, Ste. 146
Des Plaines, IL 60018
(800) 886-2282
Webserver:
Email:
National Brain Tumor Foundation
785 Market St., Ste. 1600
San Francisco, CA 94103
(800) 934-CURE
Webserver:
Email:
United Cerebral Palsy Associations, Inc.
1660 L St., NW, Ste. 700
Washington, D.C. 20036-5602
(800) 872-5827
Webserver:
Email:
Charcot-Marie-Tooth Association
601 Upland Ave.
Upland, PA 19015
(800) 606-CMTA
Webserver:
Email:
National Institute on Deafness and Other Communication
Disorders Information Clearinghouse (NIDCD)
1 Communications Ave.
Bethesda, MD 20892-3456
(800) 241-1044(Voice)
(800) 241-1055(TDD/TT)
Webserver:
Email:
Depression Awareness, Recognition and Treatment Education (D/ART)
Program National Institute of Mental Health
5600 Fishers Lane, Room 10-85
Rockville, MD 20857
(800) 421-4211 (Free Brochures)
(301) 443-4140 (Information)
Webserver:
Email:
National Alliance for Research on Schizophrenia & Depression
60 Cutter Mill Road, Ste. 200
Great Neck, NY 11021
(516) 829-0091
Webserver:
Email:
National Depressive and Manic Depressive Association
730 N. Franklin St., Ste. 501
Chicago, IL 60610
(800) 826-3632
Webserver:
Email:
National Foundation for Depressive Illnesses
P.O. Box 2257
New York, NY 10116
(800) 248-4344
Webserver:
Email:
Vestibular Disorders Association
P.O. Box 4467
Portland, OR 97208-4467
(800) 837-8428
Webserver:
Email:
Dystonia Medical Research Foundation
One East Wacker Drive
Ste. 2430
Chicago, IL 60601-2001
(312) 755-0198
Webserver: http://www.zipnet.net/users/dystonia/
Email: dystfndt@aol.com
Tardive Dyskinesia/Tardive Dystonia National Association
4244 University Way NE
P.O. Box 45732
Seattle, WA 98145-0732
(206) 522-3166
Webserver:
Email:
Anorexia Nervosa and Related Eating Disorders, Inc. (ANRED)
P.O. Box 5102
Eugene, OR 97405
(503) 344-1144
Webserver:
Email:
National Association of Anorexia Nervosa and Associated Disorders (ANAD)
P.O. Box 7
Highland Park, IL 60035
(708) 831-3438
Webserver:
Email:
The Epilepsy Foundation of America
4351 Garden City Drive
Landover, MD 20785-2267
(800) 332-1000
Webserver:
Email:
Alliance of Genetic Support Groups
35 Wisconsin Circle, Ste. 440
Chevy Chase, MD 20815
(800) 336-GENE
Webserver:
Email:
National Foundation for Jewish Genetic Diseases
250 Park Ave., Ste. 1000
New York, NY 10177
(212) 371-1030
Webserver:
Email:
National Tay-Sachs and Allied Diseases Association
2001 Beacon St.
Brookline, MA 02146
(617) 277-4463
Webserver:
Email:
Guillain-Barre Syndrome Foundation International
P.O. Box 262
Wynnewood, PA 19096
(610) 667-0131
Webserver:
Email:
American Council for Headache Education (ACHE)
875 Kings Highway
Ste. 200
Woodbury, NJ 08096
(800) 255-ACHE
Webserver:
Email:
National Headache Foundation
5252 N. Western Ave.
Chicago, IL 60625
(800) 843-2256
Webserver:
Email:
HEAD INJURY National Head Injury Foundation
1776 Massachusetts Ave. NW, Ste. 100
Washington, DC 20036
(800) 444-6443
Webserver:
Email:
Hereditary Disease Foundation
1427 7th St., Ste. 2
Santa Monica, CA 90401
(310) 458-4183
Webserver:
Email:
Huntington's Disease Society of America
140 W. 22nd St., 6th Floor
New York, NY 10011-2420
(800) 345-HDSA
Webserver: http://www.hdsa.org/
The Hydrocephalus Research Foundation
1670 Green Oak Circle
Lawrenceville, GA 30243
(404) 995-9570
Webserver:
Email:
LEARNING DISABILITIES/DYSLEXIA
Learning Disabilities Association of America
4156 Library Road
Pittsburgh, PA 15234
(412) 341-1515
Webserver:
Email:
National Center for Learning Disabilities
381 Park Ave. South, Ste. 1420
New York, NY 10016
(212) 545-7510
Webserver:
Email:
National Dyslexia Research Foundation
333 Park Ave., P.O. Box 393
Boca Grande, FL 33921
(800) 824-READ
Webserver:
Email:
Orton Dyslexia Society
Chester Building, Ste. 382
8600 LaSalle Road
Baltimore, MD 21286-2044
(800) 222-3123
Webserver:
Email:
United Leukodystrophy Foundation
2304 Highland Drive
Sycamore, IL 60178
(800) 728-5483
Webserver:
Email:
The Arc
500 E. Border St., Ste. 300
Arlington, TX 76010
(817) 261-6003
Webserver:
Email:
National Multiple Sclerosis Society
733 3rd Ave.
New York, NY 10017-3288
(800) FIGHT-MS
Webserver:
Email:
Muscular Dystrophy Association
3300 East Sunrise Dr.
Tucson, AZ 85718
(800) 572-1717
Webserver:
Email:
1821 University Ave W, Ste S256
St. Paul, MN 55104-2897 (800) 541-5454
(651) 917-6256
(651) 917-1835 fax Webserver: www.myasthenia.org
Email: mgfa@myasthenia.org
Myoclonus Families United
1564 E. 34th St.
Brooklyn, NY 11234
(718) 252-2133
Webserver:
Email:
National Neurofibromatosis Foundation
95 Pine St., 16th Floor
New York, NY 10005
(800) 323-7938
Webserver: http://www.nf.org/
Email: NNFF@aol.com
Neurofibromatosis, Inc.
8855 Annapolis Road, Ste.110
Lanham, MD 20706-2924
(800) 942-6825
Webserver:
Email:
OBSESSIVE COMPULSIVE DISORDER (OCD)
OC Foundation
P.O. Box 70
Milford, CT 06460-0070
(203) 878-5669
Webserver:
Email:
Obsessive Compulsive Information Center Dean Foundation
8000 Excelsior Drive, Ste. 302
Madison, WI 53717-1914
(608) 836-8070
Webserver:
Email:
Trichotillomania Learning Center
1215 Mission St., Ste. 2
Santa Cruz, CA 95060
(408) 457-1004
Webserver:
Email:
American Chronic Pain Association
P.O. Box 850
Rocklin, CA 95677
(916) 632-0922
Webserver:
Email:
National Chronic Pain Outreach Association
7979 Old Georgetown Rd., Ste. 100
Bethesda, MD 20814-2429
(301) 652-4948
Webserver:
Email:
American Parkinson Disease Association
1256 Hylan Blvd.
Staten Island, NY 10305
(800) 223-2732
Webserver:
Email:
Parkinson's Action Network
822 College Ave., Ste. C
Santa Rosa, CA 95404
(800) 850-4726
Webserver:
Email:
Parkinson's Disease Foundation
710 W. 168th St.
New York, NY 10032
(800) 457-6676
Webserver:
Email:
National Parkinson Foundation
1501 NW 9th Ave.
Miami, FL 33136
(800) 327-4545
(800) 433-7022 (Florida residents)
Webserver:
Email:
United Parkinson Foundation
833 W. Washington Blvd.
Chicago, IL 60607
(312) 733-1893
Webserver:
Email:
International Polio Network
5100 Oakland Ave., Ste. 206
St. Louis, MO 63110
(314) 534-0475
Webserver:
Email:
Polio Survivors Association
12720 La Reina Ave.
Downey, CA 90242
(310) 862-4508
Webserver:
Email:
International Polio Network
5100 Oakland Ave., Ste. 206
St. Louis, MO 63110
(314) 534-0475
Webserver:
Email:
Polio Survivors Association
12720 La Reina Ave.
Downey, CA 90242
(310) 862-4508
Webserver:
Email:
POST TRAUMATIC STRESS DISORDER
National Center for Post Traumatic Stress Disorder
VA Medical and Regional Office Center, 116D
White River Junction, VT 05009
(802) 296-5132
Webserver:
Email:
SEASONAL AFFECTIVE DISORDER (SAD)
National Organization for SAD (NOSAD)
P.O. Box 40133
Washington, DC 20016 (write for information)
Webserver:
Email:
VZV Research Foundation, Inc.
40 East 72nd St.
New York, NY 10021
(800) 472-VIRUS
Webserver:
Email:
Narcolepsy Network
P.O. Box 1365
FDR Station
New York, NY 10150
(914) 834-2855
Webserver:
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National Sleep Foundation
1367 Connecticut Ave., N.W., Ste. 200
Washington, DC 20036 (write for information)
Webserver:
Email:
Spina Bifida Association of America
4590 MacArthur Blvd., Ste. 250
Washington, DC 20007
(800) 621-3141
Webserver:
Email:
National Spinal Cord Injury Association
545 Concord Ave., Ste. 29
Cambridge, MA 02138
(800) 962-9629
Webserver:
Email:
National Spinal Cord Injury Hotline
Montibello Rehabilitation Center
2201 Argonne Drive
Baltimore, MD 21218
(800) 526-3456
Webserver:
Email:
Paralyzed Veterans of America
801 18th St., NW
Washington, DC 20006
(800) 424-8200
Webserver:
Email:
Spinal Cord Injury Network
250 Hungerford Drive, Ste. 115
Rockville, MD 20850
(301) 424-8335
Webserver:
Email:
American Heart Association
7272 Greenville Ave.
Dallas, TX 75231
(800) AHA-USA1
Webserver:
Email:
National Stroke Association
8480 E. Orchard Rd., Ste. 1000
Englewood, CO 80111
(800) STROKES
Webserver: http://www.stroke.org/
Email: info@stroke.org
American Syringomyelia Alliance Project
P.O. Box 1586
Longview, TX 75606-1586
(800) ASAP-282
Webserver:
Email:
Tourette Syndrome Association
42-40 Bell Blvd.
Bayside, NY 11361
800-237-0717
(718) 224-2999 (New York residents)
Webserver: http://neuro-www2.mgh.harvard.edu/TSA/tsamain.nclk
Email: tourette@ix.netcom.com
International Tremor Foundation
833 W. Washington Blvd.
Chicago, IL 60607
(312) 733-1893
Webserver:
Email:
National Tuberous Sclerosis Association
8000 Corporate Dr., Ste. 120
Landover, MD 20785
(800) 225-6872 <
Webserver: http://www.mwtech.com/webedit/tsc/
Email: Ntsa@aol.com
