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PATIENT RESOURCES: NEUROMUSCULAR & OTHER

General Organizations

AIDS
Amyotrophic Lateral Sclerosis
Ataxia
Autonomic Disorders
Barth Syndrome
Batten's Disease
Birth Defects
Blindness/Vision Impairment
Brachial Plexopathy
Brain Tumor
Charcot-Marie-Tooth Disease
Deafness
Diabetes
Disability Resources
Myasthenia Gravis
Myotonic Dystrophy
Dysautonomia
Facioscapulohumeral Dystrophy
Fibromyalgia
Genetic Disorders
Glycogen Storage Disorders
Guillain-Barré Syndrome
Hospice directory
Hydrocephalus
Inflammatory Myopathy
Kennedy's Disease (BSMA)
Leukodystrophy
Lyme Disease
Malignant Hyperthermia
Mental Retardation
Mitochondrial disorders
Multiple Sclerosis
Muscular Dystrophy
Myotubular Myopathy
Myelin Disorders
Neurofibromatosis
Neuropathy
Pain
Pediatric Neurology
Periodic Paralysis
Porphyria
Post-Polio Syndrome
Reflex Sympathetic Dystrophy
Sarcoidosis
Shingles/ Chicken Pox
Spinal Cord Disorders
Spinal Muscular Atrophy
Stroke
Toxins
Tremor
Trigeminal Neuralgia
Tuberous Sclerosis
Waldenström's Macroglobulinemia

GENERAL ORGANIZATIONS

American Association of Retired Persons (AARP)
601 E St., NW
Washington, DC 20049
(202) 424-3410

American Autoimmune Related Diseases Association
22100 Gratiot Ave.
E. Detroit, MI 48021
(810)776-3900
(800)598-4668

Arthritis Foundation

Hospice directory

National Easter Seal Society
230 W. Monroe St., Ste. 1800
Chicago, IL 60606
(312) 726-6200

National Information Center for Children and Youth with Disabilities
P.O. Box 1492
Washington, DC 20013
(800) 695-0285

National Institutes of Health
9000 Rockville Pike
Bldg. 31, Room 2B10
Bethesda, MD 20892
(301) 496-1766

National Institute of Neurological Disorders and Stroke
31 Center Drive MSC 2540
Building 31, Room 8A16
Bethesda, MD 20892-2540
(800) 352-9424

National Organization for Rare Disorders (NORD)
P.O. Box 8923
New Fairfield, CT 06812-8923
(800) 999-6673

Society for Neuroscience
11 Dupont Circle, NW
Ste. 500
Washington, DC 20036
(202) 462-6688

AIDS

CDC National Prevention Information
P.O. Box 6003
Rockville, MD 20849-6003
(800) 458-5231

MOTOR NEURON DISORDERS:
  Amyotrophic Lateral Sclerosis
    & Spinal Muscular Atrophy


Muscular Dystrophy Association
222 S. Riverside Plaza, Suite 1500
Chicago, Illinois 60606
(800) 572-1717

The ALS Association
National organization
1275 K Street NW, Suite 250
Washington, DC 20005
phone: 202-407-8580
fax: 202-289-6801
St. Louis local chapter

Families of Spinal Muscular Atrophy
National Headquarters
P.O. Box 196
Libertyville, Illinois 60048-0196
(800) 886-1762

International ALS Organizations
ALS/MND Alliance
Motor Neuron Disease Association, UK
ALS/MND Association of Spain
ALS Canada
APELA - Association of Portuguese ALS Patients: costeira@hotmail.com
Belgian ALS Ligue
Irish Motor Neurone Disease Association
Les Turner ALS Foundation, Chicago
MND Association of Australia
Vereniging Spierziekten Nederland (VSN)

ALS Advocacy Groups
ALS Association
CINI Communication Independence for the Neurologically Impaired
Project A.L.S., Inc.
ALS Therapy Development Foundation

Caregivers
Caregiver Magazine

ATAXIA

National Ataxia Foundation
2600 Fernbrook Lane
Suite 119
Minneapolis, MN 55447
(763) 553-0020 Phone
(763) 553-0167 Fax

Ataxia Telangiectasia Children's Project
668 South Military Trail
Deerfield Beach, Florida 33442-3023
Phone: (954) 481-6611 or 800-5-HELP-A-T (se habla español)
Fax: (954) 725-1153

AUTONOMIC DISORDERS

Dysautonomia Foundation
633 Third Avenue, 12th Floor
New York, NY 10017
212-949-6644
Fax: 212-682-7625

National Dysautonomia Research Foundation
421 W. 4th St.
Suite 9
Red Wing, MN 55066-2555
Tel: 651-267-0525
Fax: 651-267-0524

Shy-Drager/Multiple System Atrophy Support Group, Inc
P.O. Box 279
Coupland, TX 78615
Tel: 866-SDS-4999 & 866-SDS-5999

BARTH SYNDROME

Barth Syndrome Foundation
P.O. Box 618
Larchmont, New York 10538
Tele: (850) 223-1128
Fax: (850) 223-3911
E-Mail: bsfinfo@barthsyndrome.org
Internet: www.barthsyndrome.org

BATTEN'S DISEASE

Batten's Disease Support and Research Association
120 Humphries Dr., Suite 2
Reynoldsburg, OH 43068
(800) 448-4570

Children's Brain Disease Foundation
350 Parnassus Ave., Ste. 900
San Francisco, CA 94117
(415) 566-5402

BIRTH DEFECTS

March of Dimes Birth Defects Foundation
1275 Mamaroneck Ave.
White Plains, NY 10605
888-MODIMES (663-4637)

BLINDNESS/VISION IMPAIRMENT

Helen Keller International
352 Park Avenue South
12th Floor
New York, NY 10010
1-877/KELLER-4 (1-877-535-5374)

Lighthouse International
111 East 59th St.
New York, NY 10022-1202
(800) 829-0500

Prevent Blindness America
500 East Remington Road
Schaumburg, IL 60173-5611
(800) 331-2020

Research to Prevent Blindness
645 Madison Ave.
21st Floor
New York, NY 10022-1010
(212) 752-4333
(800) 621-0026 (outside NY)

BRACHIAL PLEXOPATHY

Brachial Plexus Network
1610 Kent
Kent, Ohio 44240 USA
ubpn@ubpn.org
866-877-7004 (Toll Free)
http://www.ubpn.org

BRAIN TUMOR

American Brain Tumor Association
2720 River Road
Des Plaines, IL 60018
(800) 886-2282

National Brain Tumor Foundation
414 Thirteenth Street, Suite 700
Oakland, CA 94612-2603
(800) 934-CURE
510.839.9777

CHARCOT-MARIE-TOOTH DISEASE

Charcot-Marie-Tooth Association
2700 Chestnut Street
Chester, PA 19013-4867
(800) 606-CMTA

Muscular Dystrophy Association
222 S. Riverside Plaza, Suite 1500
Chicago, Illinois 60606
(800) 572-1717

European Charcot-Marie-Tooth Consortium
Laboratory of Neurogenetics
University of Antwerp
B-2610 Antwerp, Belgium
Fax: 32-3-8202541
Email: gisele@uia.ua.ac.be

Muscular Dystrophy Campaign
7-11 Prescott Place
London SW4 6BS, UK
Phone: +44 (0)171-720-8055
Fax: +44 (0)171-498-0670
Email: info@muscular-dystrophy.org

DEAFNESS

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)

DIABETIC NEUROPATHY

National Institutes of Health (NIDDK)

Diabetes Net
1660 Duke Street
Alexandria, VA 22314
(800) 232-3472 or (703) 549-1500

American Dietetic Association
216 W. Jackson Boulevard
Chicago, IL 60606-6995
(800) 877-1600 or (312) 899-0040

Juvenile Diabetes Research Foundation International
120 Wall Street
New York, NY 10005-4001
Phone:(800) 533-CURE (2873)

National Diabetes Information
1 Information Way
Bethesda, MD 20892-3560
(301) 654-3327

DISABILITY: RESOURCES

Communication Independence
Access-able


FACIOSCAPULOHUMERAL MUSCULAR DYSTROPHY

FSH Society
3 Westwood Road
Lexington, MA 02420
Phone: (781) 860-0501

FSH Society
West Coast Office
1507 Traske Rd.
Encinitas, CA 92024
Phone: (760) 632-5411

FATTY ACID OXIDATION

FODSupport.org
Phone: (336) 547-8682
e-mail: deb@fodsupport.org

FIBROMYALGIA

Fibromyalgia Network
PO Box 31750
Tucson, Az. 85751-1750
Info line: (520) 290-5508
FAX: (520) 290-5550
Patient information

GENETIC DISORDERS

Genetic Alliance
4301 Connecticut Ave. NW, Suite 404
Washington, DC 20008-2304
(202)966-5557

National Foundation for Jewish Genetic Diseases
250 Park Ave., Ste. 1000
New York, NY 10177
(212) 371-1030

National Tay-Sachs and Allied Diseases Association
2001 Beacon St., Suite 204
Brighton, MA 02135
800-906-8723

GLYCOGEN STORAGE DISORDERS

Acid Maltase Deficiency Association
P.O. Box 700248
San Antonio, TX 78270-0248
Phone: (210)490-7161 or (210)494-6144
FAX: (210)497-3810 or (210) 490-7161

Association For Glycogen Storage Disease
P.O. Box 896
Durant, IA 52747
Phone: (319)785-6038

GUILLAIN-BARRÉ SYNDROME

Guillain-Barré Syndrome Foundation International
P.O. Box 262
Wynnewood, PA 19096
(610) 667-0131


HEAD INJURY

National Head Injury Foundation
1776 Massachusetts Ave. NW, Ste. 100
Washington, DC 20036
(800) 444-6443

HYDROCEPHALUS

Hydrocephalus Association

INFLAMMATORY MYOPATHIES

Muscular Dystrophy Association

222 S. Riverside Plaza, Suite 1500
Chicago, Illinois 60606
(800) 572-1717

Myositis Association
755 Cantrell Avenue, Suite C
Harrisonburg, VA 22801
Phone: (540) 433-7686
Fax: (540) 432-0206
maa@myositis.org

1233 20th St. NW, Suite 402
Washington, DC 20036
Phone: (202) 887-0082
Fax: (202) 466-8940


National Arthritis and Musculoskeletal and Skin Diseases
1 AMS Circle
Bethesda, Maryland 20892-3675
301-495-4484

KENNEDY'S DISEASE

Kennedy's Disease Association, Inc
P.O. Box 2050, Simi Valley, CA 93062-2050 (U.S.A.)
(805) 577-9591
e-mail: info@kennedysdisease.org

LYME DISEASE

American Lyme Disease Foundation
Lyme Disease Foundation
Lyme Disease Network Online

MALIGNANT HYPERTHERMIA

Malignant Hyperthermia Association
39 East State Street
PO Box 1069
Sherburne, NY 13460-1069
(800) 644-9737

MENTAL RETARDATION

The Arc
1010 Wayne Avenue, Suite 650
Silver Spring, MD 20910
(301) 565-3842

MITOCHONDRIAL DISORDERS

United Mitochondrial Disease Foundation
8085 Saltsburg Road, Suite 201
Pittsburgh, PA 15239
Phone: (412) 793-8077

Muscular Dystrophy Association

222 S. Riverside Plaza, Suite 1500
Chicago, Illinois 60606
(800) 572-1717

MULTIPLE SCLEROSIS & MYELIN DISORDERS

The Myelin Project

Multiple Sclerosis Foundation
6350 North Andrews Avenue
Fort Lauderdale, FL 33309-2130
888-MSFOCUS

Multiple Sclerosis Association of America
706 Haddonfield Road
Cherry Hill, New Jersey 08002
800-532-7667

Multiple Sclerosis Society
733 3rd Avenue
New York, NY 08107
800-344-4867

United Leukodystrophy Foundation
2304 Highland Drive
Sycamore, IL 60178
(800) 728-5483


MUSCULAR DYSTROPHY

Muscular Dystrophy Association
222 S. Riverside Plaza, Suite 1500
Chicago, Illinois 60606
(800) 572-1717
St. Louis Chapter: 1-314-962-0023

Muscular Dystrophy Association of Australia

Duchenne Parent Project
1012 North University Blvd
Middletown, OH 45042
Phone: (513) 424-0696
800-714-KIDS

The Muscular Dystrophy Family Foundation
2330 North Meridian Street
Indianapolis, Indiana 46208-5730
Phone: (800) 544-1213

International Muscular Dystrophy Organizations

MYASTHENIA GRAVIS

Myasthenia Gravis Foundation of America, Inc.
1821 University Ave, Suite S256
St. Paul, MN 55104
800-541-5454
mgfa@myasthenia.org
www.myasthenia.org

MYOTONIC DYSTROPHY

Myotonic Dystrophy Foundation
PO Box 1121
Sunland, CA 91041-1121
United States of America
(866) 679-7954
(818) 951-2311

Other: MDSGUK; MDA

MYOTUBULAR MYOPATHY

X-Linked Myotubular Myopathy Resource Group
2602 Quaker Drive
Texas City, Texas, USA 77590
(409) 945-8569
NEUROFIBROMATOSIS

National Neurofibromatosis Foundation
95 Pine St., 16th Floor
New York, NY 10005
(800) 323-7938
(212) 344-NNFF/6633

Neurofibromatosis, Inc.
8855 Annapolis Road, Ste.110
Lanham, MD 20706-2924
(800) 942-6825

NEUROPATHY

Hereditary Neuropathy Foundation, Inc
432 Park Avenue South, 4th Floor
New York, NY 10128
info@hnf-cure.org
Tel: 855-435-7268; 212-722-8396

Muscular Dystrophy Association
222 S. Riverside Plaza, Suite 1500
Chicago, Illinois 60606
(800) 572-1717

The Neuropathy Association
60 E. 42nd Street, Suite 942
New York City, N.Y. 10165
800-247-6968; 212-692-0662
St. Louis Chapter: 1-314-966-0702

Neuropathy Commons: Other organizations

PAIN (CHRONIC)

American Chronic Pain Association
P.O. Box 850
Rocklin, CA 95677
(916) 632-0922

American Pain Society
4700 W. Lake Ave.
Glenview, IL 60025
(847) 375-4715 (Phone)

National Chronic Pain Outreach Association
7979 Old Georgetown Rd., Ste. 100
Bethesda, MD 20814-2429
(301) 652-4948

PEDIATRIC NEUROLOGY

Catalog of Patient Resources

PERIODIC PARALYSIS

The Periodic Paralyses Association
1024 Royal Oaks Drive #620
Monrovia, California 91016
Phone: 626-303-3244
Fax: 626-337-1966

PORPHYRIA

American Porphyria Foundation
PO Box 22712
Houston, Texas 77227
(713) 266-9617


POST-POLIO SYNDROME

International Polio Network
4207 Lindell Boulevard, #110
Saint Louis, Missouri 63108-2915 USA
314-534-0475

REFLEX SYMPATHETIC DYSTROPHY

Reflex Sympathetic Dystrophy Syndrome Association Of America


SARCOIDOSIS

National Sarcoidosis Resource Center


SHINGLES/CHICKEN POX

VZV Research Foundation
40 East 72nd St.
New York, NY 10021
212-472-3181

SPINAL CORD DISORDERS

Spinal Cord Injury Resources

National Spinal Cord Injury Association
6701 Democracy Boulevard
Suite 300-9
Bethesda, Maryland 20817
(800) 962-9629

Paralyzed Veterans of America
801 18th St., NW
Washington, DC 20006-3517
(800) 424-8200

Spinal Cord Injury Network
800-539-7309

Spina Bifida Association of America
4590 MacArthur Blvd., Ste. 250
Washington, DC 20007
(800) 621-3141

American Syringomyelia Alliance Project
P.O. Box 1586
Longview, TX 75606-1586
(800) ASAP-282
Info@ASAP.org

Spinal Cord Injury Canada
130 Albert Street
Varette Bldg, Suite 512
Ottawa, ON, Canada
K1P 5G4
Phone: (613) 723-1913

Spastic Paraplegia Foundation

STROKE

American Heart Association
7272 Greenville Ave.
Dallas, TX 75231
800-242-8721

National Stroke Association
9707 E. Easter Lane
Englewood, Co. 80112
1-800-STROKES; 303-649-9299

Toxins
Tox Town

TREMOR

International Essential Tremor Foundation
7046 W. 105th Street
Overland Park, Kansas 66212-1803
888-387-3667; 913-341-3880
Fax: 913-341-1296

TRIGEMINAL NEURALGIA

Trigeminal Neuralgia Association
2801 SW Archer Rd, Suite C
Gainsville, Florida 32608
(904) 779-0333 Patient information
(352) 376-9955

TUBEROUS SCLEROSIS

Tuberous Sclerosis Alliance
801 Roeder Road, Suite 750
Silver Spring, MD 20912
(800) 225-6872

Tuberous Sclerosis Alliance
801 Roeder Road, Suite 750
Silver Spring, MD 20912
(800) 225-6872

WALDENSTRÖM'S MACROGLOBULINEMIA

International Waldenström's Macroglobulinemia Foundation




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11/5/2015