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Giunzioni neuromuscolari, Nervi, Spinale, Atassia, Anticorpi e Biopsia, Informazioni per i pazienti File tradotto parzialmente. RICHIESTA DI TRADUZIONE a Natale Marzari |
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Dopo 41 anni e 5 mesi, nel maggio 2006 la
magistratura di Trento ha riconosciuto l'esistenza e la gravità di quella
malattia rara che nessuna altra istituzione o persona singola della provincia di
Trento ancora mi riconosce, e per negare la quale mi perseguita. Natale Marzari |
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PATIENT RESOURCES: NEUROMUSCULAR e ALTRE
GENERALE ORGANIZATIONS American Association of Retired Persons (AARP) 601 E St., NW Washington, DC 20049 (202) 424-3410 American Autoimmune Related Malattie 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 InFormazioni Center per Children e Youth con 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 Neurologico Malattie e Ictus 
31 Center Drive MSC 2540
Building 31, Room 8A16 Bethesda, MD 20892-2540 (800) 352-9424 National Organization per Rare Malattie (NORD) P.O. Box 8923 Nuove Fairfield, CT 06812-8923 (800) 999-6673 Society per Neuroscience 11 Dupont Circle, NW Ste. 500 Washington, DC 20036 (202) 462-6688 AIDS CDC National Prevenzione InFormazioni P.O. Box 6003 Rockville, MD 20849-6003 (800) 458-5231 ALCOHOL AND DRUG ABUSE National Clearinghouse per Alcol e Drug InFormazioni P.O. Box 2345 Rockville, MD 20847-2345 (800) 729-6686 MOTOR NEURON DISORDERS: Sclerosi laterale amiotrofica e Spinale Muscolare Atrofia Muscolare Distrofia Association 
3300 East Sunrise Dr. Tucson, AZ 85718 (800) 572-1717 
The SLA AssociationNational organization; Local chapters 21021 Ventura Blvd., Ste. 321 Woodland Hills, CA 91364-2206 (800) 782-4747 Familie of Spinale Muscolare Atrofia National Capoquarters P.O. Box 196 Libertyville, Illinois 60048-0196 (800) 886-1762 International SLA Organizations SLA/MND Alliance Motorio Neuron Malattia Association, UK SLA/MND Association of Spain SLA Canada APELA - Association of Portugese SLA Patients: costeira@hotmail.com Belgian SLA Ligue irlandesi Motorio Neurone Malattia Association Les Turner SLA Foundation, Chicago MND Association of Australia scandinave SLA Webpage Scottish Motorio Neurone Malattia Association Vereniging Spierziekten Nederland (VSN) SLA Advocacy Groups SLA Society SLA March of Faces CINI Communication Independence per the Neurologically Danneggiata Hope For SLA Project A.L.S., Inc. Team SLA SLA Therapy Sviluppo Foundation caregivers caregiver Magazine ARTHROGRYPOSIS Avenues-Artrogriposi multiple Congenita PO Box 5192 Sonora, CA 95370 (209) 928-3688 Atassia 
National Atassia Foundation2600 Fernbrook Lane Suite 119 Minneapolis, MN 55447 (763) 553-0020 Phone (763) 553-0167 Fax 
Atassia Telangiectasia Children's Project668 South Military Trail Deerfield Beach, Florida 33442-3023 Phone: (954) 481-6611 o 800-5-HELP-A-T (se habla español) Fax: (954) 725-1153 AUTONOMIC DISORDERS Disautonomia Foundation 633 Third Avenue, 12th Floor Nuove York, NY 10017 212-949-6644 Fax: 212-682-7625 National Disautonomia Research Foundation 421 W. 4a St. Suite 9 Rossa Wing, MN 55066-2555 Tel: 651-267-0525 Fax: 651-267-0524 Shy-Drager/Atrofia multisistemica Support Gruppo, Inc. 2004 Howard Lane Austin TX 78728 Tel: 866-SDS-4999 (737-4999) 800-288-5582 Fax: 512-251-3315 BARTH SYNDROME Barth Sindrome Foundation P.O. Box 23173 Lincoln, NE 68542-3173 BATTEN'S MALATTIE Batten's Malattia Support e Research Association 120 Humphries Dr., Suite 2 Reynoldsburg, OH 43068 (800) 448-4570 Children's Cervello Malattia Foundation 350 Parnassus Ave., Ste. 900 San Francisco, CA 94117 (415) 566-5402 BIRTH difettoS March of Dimes Nascita Difetti Foundation 1275 Mamaroneck Ave. White Plains, NY 10605 888-MODIMES (663-4637) BLINDNESS/VISION IMPAIRMENT Helen Keller International 352 Park Avenue South 12th Floor Nuove York, NY 10010 1-877/KELLER-4 (1-877-535-5374) Lighthouse International 111 East 59th St. Nuove York, NY 10022-1202 (800) 829-0500 Prevenire Blindness America 500 East Remington Road Schaumburg, IL 60173-5611 (800) 331-2020 Research to Prevenire Blindness 645 Madison Ave. 21a Floor Nuove York, NY 10022-1010 (212) 752-4333 (800) 621-0026 (outside NY) BONE e JOINT DISORDERS Bone e Joint Malattie: paziente InFormazioni 
BRACHIAL PLEXOPATHYThe Brachial Plexus Palsy Foundation 210 Spring Haven Circle Royersford, PA 19468 (610) 792-0974 BRAIN TUMOR American Cervello Tumor Association 2720 River Road Des Plaines, IL 60018 (800) 886-2282 National Cervello Tumor Foundation 414 Thirteenth Street, Suite 700 Oakland, CA 94612-2603 (800) 934-CURE 510.839.9777 CEREBRAL PALSY United Cerebral Palsy Associazioni 1660 L St., NW, Ste. 700 Washington, D.C. 20036-5602 (800) 872-5827 CHARCOT-MARIE-TOOTH MALATTIE 
Charcot-Marie-Tooth Association
2700 Chestnut Street Chester, PA 19013-4867 (800) 606-CMTA CMT Net: paziente information Muscolare Distrofia Association 3300 East Sunrise Dr. Tucson, AZ 85718 (800) 572-1717 europei Charcot-Marie-Tooth Consortium Laboratorio of Neurogenetics University of Antwerp B-2610 Antwerp, Belgium Fax: 32-3-8202541 Email: gisele@uia.ua.ac.be Muscolare Distrofia Campaign 7-11 Prescott Place London SW4 6BS, UK Phone: +44 (0)171-720-8055 Fax: +44 (0)171-498-0670 Email: info@muscular-distrofia.org Sordità National Institute on Sordità e Altro Communication Malattie InFormazioni Clearinghouse (NIDCD) 1 Communications Ave. Bethesda, MD 20892-3456 (800) 241-1044(Voice) (800) 241-1055(TDD/TT) DIABETIC NEUROPATIE National Institutes of Health (NIDDK) American Diabete Association National Service Center 1660 Duke Street Alexandria, VA 22314 (800) 232-3472 o (703) 549-1500 American Dietetic Association 216 W. Jackson Boulevard Chicago, IL 60606-6995 (800) 877-1600 o (312) 899-0040 American Cuore Association 7272 Greenville Avenue Dallas, TX 75231 (800) 242-8721 Giovanile Diabete Research Foundation International 120 Wall Street Nuove York, NY 10005-4001 Phone:(800) 533-CURE (2873) National Diabete InFormazioni 1 InFormazioni Way Bethesda, MD 20892-3560 (301) 654-3327 
DISABILITY: RESOURCESCommunication Independence Access-able FACIOSCAPULOHUMERAL MUSCOLARI 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 paziente information GENETIC DISORDERS Genetic disease websiti Genetic Alliance 4301 Connecticut Ave. NW, Suite 404 Washington, DC 20008-2304 (202)966-5557 National Foundation per Jewish Genetic Malattie 250 Park Ave., Ste. 1000 Nuove York, NY 10177 (212) 371-1030 National Tay-Sachs e Allied Malattie Association 2001 Beacon St., Suite 204 Brighton, MA 02135 800-906-8723 GLICOGENO STORAGE DISORDERS Carenza di maltasi acida Association P.O. Box 700248 San Antonio, TX 78270-0248 Phone: (210)490-7161 o (210)494-6144 FAX: (210)497-3810 o (210) 490-7161 Association For Glicogeno Accumulo Malattia P.O. Box 896 Durant, IA 52747 Phone: (319)785-6038 Association For Glicogeno Accumulo Malattia (UK) 
GUILLAIN-BARRÉ SYNDROME
Sindrome Guillain-Barré Foundation International P.O. Box 262 Wynnewood, PA 19096 (610) 667-0131 Capo INJURY National Capo Injury Foundation 1776 Massachusetts Ave. NW, Ste. 100 Washington, DC 20036 (800) 444-6443 HYDROCEPHALUS Idrocefalo Association INFLAMMATORY MIOPATIE Muscolare Distrofia Association 3300 East Sunrise Dr. Tucson, AZ 85718 (800) 572-1717
National Arthritis e Musculoskeletal e Cute Malattie 1 AMS Circle Bethesda, Maryland 20892-3675 301-495-4484 KENNEDY'S MALATTIE Kennedy's Malattia Association, Inc P.O. Box 2050, Simi Valley, CA 93062-2050 (U.S.A.) (805) 577-9591 e-mail: info@kennedysdisease.org LYME MALATTIE American Lyme Malattia Foundation Lyme Malattia Foundation Lyme Malattia Network Online MALIGNANT HYPERTHERMIA Ipertermia maligna Association 39 East State Street PO Box 1069 Sherburne, NY 13460-1069 (800) 644-9737 Ritardo mentale The Arc 1010 Wayne Avenue, Suite 650 Argento Spring, MD 20910 (301) 565-3842 MITOCHONDRIAL DISORDERS United Mitocondriali Malattia Foundation 8085 Saltsburg Road, Suite 201 Pittsburgh, PA 15239 Phone: (412) 793-8077 Muscolare Distrofia Association multipla SCLEROSIS e MIELINA DISORDERS The Mielina Project multipla Sclerosis Foundation 6350 North Andrews Avenue Fort Lauderdale, FL 33309-2130 888-MSFOCUS multipla Sclerosis Association of America 706 Haddonfield Road Cherry Hill, Nuove Jersey 08002 800-532-7667 multipla Sclerosis Society 733 3a Avenue Nuove York, NY 08107 800-344-4867 United Leukodystrophy Foundation 2304 Highland Drive Sycamore, IL 60178 (800) 728-5483 MUSCOLARI DYSTROPHY
Muscolare Distrofia Association
3300 East Sunrise Dr. Tucson, AZ 85718 (800) 572-1717 St. Louis Chapter: 1-314-962-0023 Muscolare Distrofia Association of Australia Duchenne genitore Project 
1012 North University BlvdMiddletown, OH 45042 Phone: (513) 424-0696 800-714-KIDS The Muscolare Distrofia Famiglia Foundation 2330 North Meridian Street Indianapolis, Indiana 46208-5730 Phone: (800) 544-1213 International Muscolare Distrofia Organizations MIASTENIA GRAVE 
Miastenia grave Foundation5841 Cedar Lake Road, Suite 204 Minneapolis, MN 55416 (952) 545-9438; (800) 541-5454 MYELOMA International Myeloma Foundation MYOTONIC DYSTROPHY International Miotonia distrofica Organization PO Box 1121 Sunland, CA 91041-1121 United States of America (866) 679-7954 (818) 951-2311 MYOTUBULAR MIOPATIA Collegate al cromosoma X Miotubulare Miopatia Resource Gruppo 2602 Quaker Drive Texas City, Texas, USA 77590 (409) 945-8569 NEUROFIBROMATOSIS National Neurofibromatosi Foundation 95 Pine St., 16th Floor Nuove York, NY 10005 (800) 323-7938 (212) 344-NNFF/6633 Neurofibromatosi, Inc. 8855 Annapolis Road, Ste.110 Lanham, MD 20706-2924 (800) 942-6825 NEUROPATIE Charcot-Marie-Tooth Association 2700 Chestnut Street Chester, PA 19013-4867 (800) 606-CMTA Muscolare Distrofia Association 3300 East Sunrise Dr. Tucson, AZ 85718 (800) 572-1717 
The Neuropatia Association60 E. 42nd Street, Suite 942 Nuove York City, N.Y. 10165 800-247-6968; 212-692-0662 St. Louis Chapter: 1-314-966-0702 PAIN (CHRONIC) American Cronica Dolore Association P.O. Box 850 Rocklin, CA 95677 (916) 632-0922 American Dolore Society 4700 W. Lake Ave. Glenview, IL 60025 (847) 375-4715 (Phone) National Cronica Dolore Outreach Association 7979 Old Georgetown Rd., Ste. 100 Bethesda, MD 20814-2429 (301) 652-4948 PEDIATRIC NEUROLOGY Catalog of paziente 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 Porfiria 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 Polio Sopravvivenza Association 12720 La Reina Ave. Downey, CA 90242 (562) 862-4508 REFLEX SYMPATHETIC DYSTROPHY Distrofia dei riflessi simpatici Sindrome Association Of America SARCOIDOSIS National Sarcoidosi Resource Center SHINGLES/CHICKEN POX VZV Research Foundation 40 East 72nd St. Nuove York, NY 10021 212-472-3181 MIDOLLO SPINALE DISORDERS American Paralisi Association (APA) 500 Morris Ave Springfield, NJ 07081 800-225-0292 Spinale Cord Injury Resources National Spinale Cord Injury Association 6701 Democracy Boulevard Suite 300-9 Bethesda, Maryland 20817 (800) 962-9629 National Spinale Cord Injury Hotline 2200 Kernan Dr Baltimore, MD 21207 (800) 526-3456 Paralyzed Veterans of America 801 18th St., NW Washington, DC 20006-3517 (800) 424-8200 Spinale Cord Injury Network 3911 Princeton Drive Santa Rosa, CA 95405-7013 707-577-8796 Spinale Cord Society (SCS) Route 5 Box 22A Wendell, MN 56537 218-739-5252 Spina Bifida Association of America 4590 MacArthur Blvd., Ste. 250 Washington, DC 20007 (800) 621-3141 American Siringomielia Alliance Project P.O. Box 1586 Longview, TX 75606-1586 (800) ASAP-282 Canadian Paraplegic Association 1101 prom. Prince of Wales Dr., Suite 230 Ottawa ON K2C 3W7 800-720-4933 Spastic Paraplegia Foundation STROKE American Cuore Association 7272 Greenville Ave. Dallas, TX 75231 800-242-8721 National Ictus Association 9707 E. Easter Lane Englewood, Co. 80112 1-800-STROKES; 303-649-9299 Tossine Tox Town TREMOR International Essential Tremore Foundation 7046 W. 105th Street Overland Park, Kansas 66212-1803 888-387-3667; 913-341-3880 Fax: 913-341-1296 TRIGEMINAL NEURALGIA Trigemino Neuralgia Association 2801 SW Archer Rd, Suite C Gainsville, Florida 32608 (904) 779-0333 paziente information (352) 376-9955 TUBEROUS SCLEROSIS Tuberous Sclerosis Alliance 801 Roeder Road, Suite 750 Argento Spring, MD 20912 (800) 225-6872 Tuberous Sclerosis Alliance 801 Roeder Road, Suite 750 Argento Spring, MD 20912 (800) 225-6872 WALDENSTRÖM'S MACROGLOBULINEMIA International Waldenström's Macroglobulinemia Foundation |
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