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Muscle, NMJ, Nerve, Spinal, Ataxia, Antibody & Biopsy, Patient Info
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Home, Search, Index, Links, Pathology, Molecules, Syndromes, Muscle, NMJ, Nerve, Spinal, Ataxia, Antibody & Biopsy, Patient Info |
PATIENT RESOURCES: NEUROMUSCULAR & OTHERGENERAL 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 AssociationNational 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 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 Foundation2600 Fernbrook Lane Suite 119 Minneapolis, MN 55447 (763) 553-0020 Phone (763) 553-0167 Fax 
Ataxia Telangiectasia Children's Project668 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 PLEXOPATHYBrachial 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 AssociationPO Box 105 Glenolden, PA 19036 1-800-606-2682 1-610-499-9267 info@cmtausa.org 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: RESOURCESCommunication 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 Polyuglucosan Body (APBD) 
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
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 161 N. Clark, Suite 3550 Chicago, Illinois 60601 (800) 572-1717 resourcecenter@mdausa.org St. Louis Chapter: 1-314-962-0023 Muscular Dystrophy Association of Australia Duchenne Parent Project 
1012 14th Street, NW, Suite 500Washington, DC 20005 Phone: 201-250-8440 800-714-5437 info@parentprojectmd.org The Muscular Dystrophy Family Foundation 2330 North Meridian Street Indianapolis, Indiana 46208-5730 Phone: (800) 544-1213 MYASTHENIA GRAVIS 
Myasthenia Gravis Foundation of America 290 Turnpike Road, Suite 5-315 Westborough, MA 01581 800-541-5454 mgfa@myasthenia.org MYOTONIC DYSTROPHY Myotonic Dystrophy Foundation 663 Thirteenth Street, Suite 100 Oakland, CA 94612 United States of America info@myotonic.org (866) 968-6642 415-800-7777 Other: 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 Association60 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 |
