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1995 PATIENT INFORMATION GUIDE FOR NEUROLOGY ACOUSTIC NEUROMA Acoustic Neuroma Association (ANA) PO Box 12402 Atlanta, GA 30355 404-237-8023 Brochures: Information and support
Costs: costs vary-request order form Other Services: referral services, local chapters, support groups, audio/visual materials Also See: NORD ALZHEIMER'S DISEASE Alzheimer's Disease Education & Referral Center (ADEAR) PO Box 8250 Silver Spring, MD 20907-8250 800-438-4380 Fax: 301-495-3334 Brochures: Alzheimer's disease fact sheet
Costs: single copies are free Other Services: referral services, information on clinical trials Alzheimer's Disease and Related
Brochures: Alzheimer's National Association brochure
Booklets: Alzheimer's Association 1993 National program to
conquer Alzheimer's disease
Books: Care of Alzheimer's patients: A manual for nursing
home staff
Factsheets: Alzheimer's disease fact sheet, 1993
Brochures: The Alzheimer's Foundation
Costs: single copies are free Other Services: referral services, information on clinical trials, audio/visual materials Also See: NIA, NORD, NIMH AMYOTROPHIC LATERAL SCLEROSIS The ALS Association (ALSA) 21021 Ventura Boulevard #321 Woodland Hills, CA 91364 818-340-7500 Brochures: ALS and the ALS Association
Costs: costs vary-request order form Other Services: referral services, local chapters, information on clinical trials, support groups, audio/ visual materials
Brochures ALS information packet
Costs: initial packet is free contact CNS for prices for multiple orders Other Services: newsletter, referral services, information on clinical trials, support groups, audio/visual materials
Other Services: referral services, information on clinical trials, support groups, audio/visual materials
Brochures: Questions & answers about ALS
Costs: single copies are free Other Services: referral services, information on clinical trials, support groups, audio/visual materials Also See: MDA, NINDS, NORD ANGELMAN SYNDROME Angelman Syndrome Foundation, Inc. 5950-77 SW 20 Avenue Gainsville, FL 32607-3644 904-332-3303 Brochures: Facts about Angelman syndrome
Costs: request order form, some items are free Other Services: referral services, local chapters, support groups, newsletter, information on clinical trials, audio/visual materials Also See: NORD ANOREXIA NERVOSA National Association of Anorexia Nervosa and Associated Disorders (NAANAD) PO Box 7 Highland Park IL 60035 Brochures: Anorexia nervosa/bulimia-symptoms
Costs: single copies are free Other Services: referral services, local chapters, information on clinical trials, support groups, research Also See: NORD APHASIA National Aphasia Association (NAA) PO Box 1887 Murray Hill Station New York, NY 10156-0611 212-340-6025 (800) 922-4622 Brochures: Aphasia fact sheet
Costs: single copies are free Other Services: community groups, local chapters Also See: NINDS ARTHROGRYPOSIS MULTIPLEX CONGENITA Avenues, National Support Group for Arthrogryposis Multiplex Congenita (ANSGAMC) PO Box 5192 Sonora, CA 95370 (209) 928-3688 Brochures: What is arthrogryposis? List of medical professionals interested in
arthrogryposis
Costs: single copies are free Other Services: referral services, support groups, newsletter, pen pal services, audio/visual materials Also See: NORD ATAXIA National Ataxia Foundation (NAF)
Brochures: Hereditary ataxia (HA)-the facts
Costs: single copies are free Other Services: newsletter, support groups, referral services, local chapters AUTISM Autism Society of America 7910 Woodmont Avenue Suite 650 Bethesda, MD 20814-3015 (301) 657-0881 (800) 3-AUTISM Brochures: general information packet Cost: single copies are free Other Services: Patient-oriented information, referral services, local chapters, information on clinical trials, support groups, audio/visual material New Jersey Center for Outreach & Services for
the Autism Community (NJCOSAC)
Brochures: request a publication listing Costs: refer to publication listing Other Services: referral services, local chapters, information on clinical trials, support groups, audio/ visual library Also See: NORD BATTEN DISEASE Batten Disease Support & Research Association (BDSRA) 2600 Parsons Avenue Columbus, OH 43207 (800) 448-4570 Brochures: Batten Disease
Costs: single copies are free
Children's Brain Disease Foundation (CBDF)
Brochures: Batten Disease Other Services: referral services, support groups
Brochures: Batten disease Costs: single copies are free Other Services: referral services, information on clinical trials Also See: NTSADA, NINDS, NORD BEHCET'S DISEASE American Behcet's Association (ABA) PO Box 54063 Minneapolis, MN 55454-0063 Brochures: Behcet's Disease: What you should know
Costs: costs vary-request order form Other Services: patient-oriented materials, referral services, newsletter, local chapters, information on clinical trials, support groups Also See: NORD BELL'S PALSY
Communications Department One Prince Street Alexandria, VA 22314 (703) 836-4444 Fax: (703) 683-5100 Brochures: A discussion of facial nerve problems Costs: $18 per 100 copies plus $1 handling charge
Group Health Inc.
Booklet: Bell's Palsy Cost: single copies are free Also See: NORD BENIGN ESSENTIAL BLEPHAROSPASM
Inc. (BEBRF) PO Box 12468 Beaumont, TX 77726-2468 (409) 832-0788 Brochures: Benign essential blepharospasm
Costs: single copies are free Other Services: referral services, local chapters, support groups, audio/visual materials Also See: NORD BRAIN TUMORS
2720 River Road, Suite 146 Des Plaines, IF 60018 (708) 827-9910 Fax: (708) 827-9918 Patient line: (800) 886-2282 Booklets:
A primer of brain tumors
Brochures: A professional's guide to the American Brain Tumor
Association
Costs: single copies are provided free. Other Services: referrals, support group information, information on clinical trials, physician resource lists, newsletter, pen pal program, treatment facilities listing
Brain Tumor Foundation for Children Inc.
Brochures: Alex's journey
Costs: single copies are free Other Services: newsletter, referral services, support groups, audio/visual materials
National Brain Tumor Foundation (NBTF)
Brochures: About brain tumors: A guide Brain tumor support groups in America Gathering a life: A journal of recovery Costs: single copies are free Other Services: newsletter, referral services, audio/visual services Also See: NINDS CEREBRAL PALSY
7 Penn Plaza #804 New York, NY 10001 (212) 268-6655 Brochures: Cerebral palsy-facts and figures Costs: single copies are free Other Services: medical diagnosis, evaluation & treatment; special education; career development; social and recreation programs; parent counseling; adapted dousing for the disabled; advocacy, and community education Also See: NINDS, NORD CHARCOT-MARIE-TOOTH DISEASE
One Springbank Drive St. Catharines, Ontario CANADA L2S 2K1 (905) 687-3630 Fax: (905) 687-8753 Brochures: request publication listing Costs: costs vary - request publication listing Other Services: referral services, information on clinical trials, newsletter
Charcot-Marie-Tooth Association (CMTA)
Brochures: CMT Facts I
Costs: costs vary - request order form Other Services: information on clinical trials, support groups, newsletter, audio/visual materials, CMT patient/family regional conferences, referral services Also See: NAF, MDA, NORD COMA
1776 Massachusettes Avenue NW #100 Washington, DC 20036 (202) 296-6443 Family help line (800) 444-6443 Brochures: request publication listing Costs: costs vary - request a publication listing CONGENITAL LACTIC ACIDOSIS
PO Box 480282 Denver, CO 80248-0282 Services: newsletter CUSHING'S SYNDROME
4620 1/2 Van Nuys Boulevard Sherman Oaks, CA 91403 Brochures: Living with a rare disorder: Hope & fear
Costs: single copies are free Other Services: patient orientated information, referral services, information on clinical trials, support groups DANDY WALKER SYNDROME
870 Market Street, Suite 955 San Francisco, CA 94102 (415) 776-4713 Brochures: About hydrocephalus - A book for parents
Costs: Copies of "About hydrocephalus - A book for parents" 1-49 copies $2.00 each. 50 or more copies $1.75 each (pre-paid only) Other Services: referrals, support groups, audio/ visual materials DERMATOMYOSITIS
Tina Kline 1119 Spring Garden Street Bethlehem, PA 18017 (215) 974-9832 Services: newsletter DOWN SYNDROME
1605 Chantilly Drive Suite 250 Atlanta, GA 30324-3269 (800) 232-6372 Brochures: Down syndrome Cost: single copies are free, additional copies $.75 each Other Services: referral services, support groups, local chapters Also See: ARC, NORD DYSAUTONOMIA, FAMILIAL
20 East 46th Street Room 302 New York, NY 10017 (212) 949-6644 Brochures: ABC brochure
Costs: single copies are free Other Services: audio/visual materials Also See: NFJGD, NORD DYSLEXIA
8600 LaSalle Road Suite 382, Chester Bldg Baltimore, MD 21286-2044 (410) 296-0232 (800) 222-3123 (outside MD) Brochures: request publications list Cost: costs vary- request order form Other Services: local chapters, support groups, referral services, information on clinical trials Also See: LDAA, NORD DYSPHONIA, CHRONIC SPASMODIC
799 Broadway Suite 640 New York, NY 10003 Cost: $20.00 per year for subscription Services: newsletter Also See: NORD DYSTONIA
One East Wacker Dr. #2900 Chicago, IL 60601-2001 (312) 755-0198 Brochures: Foundation fact sheet
Brain bank information Costs: single copies are free Other Services: referral services, local chapters, support groups, audio/visual materials, newsletter
"WE MOVE"
Also See: NFJGD EPILEPSY
4351 Garden City Drive Landover, MD 20785 (301) 459-3700 Brochures: About EFA
Costs: costs vary-request order form Other Services: training and placement service, referral services, local chapters, information on clinical trials, support groups, audio/visual materials Also See: NINDS, NORD GAUCHER'S DISEASE
1424 K Street, NW, 4th Floor Washington, DC 20005 (202) 393-2777 Brochures: National Gaucher Foundation brochure Costs: single copies are free Other Services: support groups, newsletter, physician referrals Also See: NTSADA, NFJGD, NORD GUILLAIN-BARRE SYNDROME
PO Box 262 Wynnewood, PA 19096 (610) 667-0131 Brochures: Guillain-Barre Syndrome(acute idiopathic polyneuritis)
Costs: single copies are free Other Services: referral services, local chapters, information on clinical trials, support groups, audio/ visual materials, newsletter, symposia Also See: NORD HEADACHE American Association for the Study of Headache 875 Kings Highway Suite 200 Woodbury, NJ 08096 Brochures: Migraine: The complete guide Costs: costs vary-request order form Other Services: referral services,support groups, audio visual materials
American Council for Headache Education (ACHE)
Services: referral services, patient information, local chapters, support groups, audio/visual materials
Group Health Inc.
Booklet: Cluster headaches Cost: single copies are free
National Headache Foundation (NHF)
Brochures: request publication listing Costs: costs vary-request order form by sending a self-addressed business-sized envelope with $.45 postage. Other Services: support groups Also See: NINDS HEAD INJURY Family Caregiver Alliance 425 Bush Street, Suite 500 San Francisco, CA 94108 (415) 434-3388 Brochures: request publication listing Costs: costs vary-request order form Other Services: referral services, local chapters, information on clinical trials, support groups
The National Head Injury Foundation (NHIF)
Brochures: request publication listing Costs: costs vary-request order form Other Services: referral services, local chapters, information on clinical trials
The Perspectives Network (PN)
Services: magazine, peer communication networks, lending library, topical library, brain injury empathy seminars Also See: NINDS HUNTINGTON'S DISEASE
McLean Hospital 115 Mill Street Belmont, MA 02178-9983 (800) 272-4622 Brochures: Gift of hope
Costs: single copies are free Other Services: newsletter, referral services, support groups, audio/visual materials
Hereditary Disease Foundation (HDF)
Brochures:
Huntington's disease "discovery," fact sheet
Costs: costs vary-request order form Other Services: referrals
Huntington Society of Canada (HSC)
Brochures:
Resource booklet for patients & families with
Costs: costs vary-request order form Other Services: referral services, local chapters, information on clinical trials, support groups, audio/visual materials, newsletter
Huntington's Disease Society of America (HDSA)
Brochures: please request order form Costs: costs vary - request order form Other Services: referral services, local chapters, information on clinical trials, support groups, audio/ visual materials, telephone information line Also See: NORD HYDROCEPHALUS
2618 Avenue Z Brooklyn, New York 11235 (718) 743-4473 Brochures: An introduction to hydrocephalus Costs: single copies are free Other Services: referrals, local chapters, information on clinical trials, support groups, audio/visual materials
Hydrocephalus Association (HA)
Brochures: About hydrocephalus- A book for parents
Costs: Copies of "About hydrocephalus - A book for parents" 1-49 Copies $2.00 each; 50 or more copies $1.75 each (pre-paid only) Other Services: referrals, support groups, conference
National Hydrocephalus Foundation (NHF)
Brochures:
National Hydrocephalus Foundation
Costs: Single copies are free Other Services: local chapters, support groups, audio/visual materials, referral services Also See: NORD LANGUAGE DISORDERS
10801 Rockville Pike Rockville, MD 20852 (301) 897-5700 Brochures:
Costs: single copies are free Other Services: referral services, local chapters, support groups Also See: "Our Voice" LEARNING DISABILITIES
National Office 499 NW 70th Avenue #109 Plantation, FL 33317 (305) 587-3700 (305) 587-4599
Learning Disabilities Association of America (LDAA)
Brochures: ADD brochure
Costs: costs vary-request order form Other services: referral services, local chapters, support group, audio/visual materials
National Center for Learning Disabilities (NCLD)
LEUKODYSTROPHY
2304 Highland Drive Sycamore, IL 60178 (815) 895-3211 Brochures: request a publication listing Costs: costs vary-request order form Other Services: referral services, information on clinical trials, support groups, audio/visual materials, newsletter Also See: NTSADA, NORD LOWE'S SYNDROME
222 Lincoln Street West Lafayette, IN 47906 (317) 743-3634 Brochures: Care today ..cure tomorrow
Costs: single copies are free Other Services: referrals, information on clinical trials, support groups, audio/visual materials, newsletter Also See: NORD MALIGNANT HYPERTHERMIA
PO Box 191 Westport, CT 06881-0191 (203) 847-0407 Brochures: What is malignant hyperthermia? What is MHAUS? Costs: single copies are free Other Services: patient-oriented information materials, referral services. Also See: NORD MENTAL RETARDATION
National Headquarters 500 E. Border St. S-300 Arlington, TX 76010 (817) 261-6003 (817) 277-0553 (TDD) Brochures: request a publications listing Costs: costs vary - request order form Other Services: referral services, local chapters, support groups, audio/visual materials MERALGIA PARESTHETICA
Riverside-Neurology Dept. Attn: Bryce Dorweiler 2220 Riverside Avenue S. Minneapolis, MN 55454 (612)371-1715 Brochures: What is Meralgia Paresthetica Costs: single copies are free MOEBIUS SYNDROME
6449 Gerald Avenue Van Nuys, CA 91406 (818) 908-9288 Brochures: Moebius syndrome fact sheet
Costs: single copies are free Services: support groups, telephone support network Also see: NORD MUCOPOLYSACCHARIDOSES
17 Kramer Street Hicksville, NY 11801
Booklet:
Costs: costs vary-request order form Other Services: patient-oriented information, referral services, support groups, newsletter Also See: NTSADA, NORD MULTIPLE SCLEROSIS
11211 Sorrento Valley Rd. Suite H San Diego, CA 92121 (619) 455-5463 Fax: (619) 455-1713 Brochures: Multiple sclerosis information packet Costs: initial packet is free Other Services: referral services, information on clinical trials, support groups, audio/visual materials
Multiple Sclerosis Association of America (MSAA)
Brochures: MSAA brochure
Cost: single copies are free Services: referral services, local chapters, information on clinical trials, support groups, audio/visual materials
National Multiple Sclerosis Society (NMSS)
Brochures: Things I wish someone had told me
But you look so good (fatigue) A certain four-letter word-PAIN Should I have a baby? The ABC's of diagnosing MS Insight into eyesight After you've been told... A crucial job hunt question: Should I tell? Rehab: It's an outlook What every employer should know about MS MRI-no mystique Getting a grip on gait Me? Use a catheter? Heredity, genes and MS Let's open up the subject of personality change Costs: single copies are free?request order form for multiple copy requests. Other Services: referral services, local chapters, information on clinical trials, support groups, audio/ visual materials Also See: NINDS MUSCULAR DYSTROPHY
PO Box 1465 Highland Park, IL 60035-7465 (800) 886-1762 (708) 432-5551 Services: support groups, newsletter, referral services, local chapters, information on clinical trials, audio/ visual materials
Muscular Dystrophy Association (MDA)
Brochures: Everybody's different, nobody's perfect
Costs: single copies are free Other Services: referral services, local chapters, information on clinical trials, support groups, audio/ visual materials Also See: NORD MYASTHENIA GRAVIS
National Office 222 S. Riverside Plaza, Suite 1540 Chicago, IL 60606 (312) 258-0522 (800) 541-5454 Brochures: Practical guide to myasthenia gravis
Costs: costs vary - request order form Other Services: referral services, local chapters, information on clinical trials, support groups, audio/ visual materials Also See: MDA, NORD MYOCLONUS
2934 Glenmore Avenue Kettering, OH 45409 (513) 293-0409 Brochure: What is myoclonus? Cost: copies are free
Myoclonus Research Foundation (MRF)
Brochures: Myoclonus Research Foundation Costs: single copies are free Other Services: referral services
National Pediatric Myoclonus Center
Department of Neurology, Childrens National Medical Center
Brochures: What is the National Pediatric Myoclonus Center
Costs: single copies are free Other services: referral services, information on" clinical trials, support groups, newsletter MYOSITIS
PO Box 890 Cooperstown, NY 13326 (800) 230-0441 Article: The treatment of inclusion body myositis: A retrospective review and a randomized, perspective trial of immunosuppressive therapy Services: newsletter Also See: NORD NARCOLEPSY
1610 - 14th Street NW Suite 300 Rochester, MN 55901 (507) 287-6006 Brochures: please request publications listing Costs: costs vary-request order form Other Services: referral services
Narcolepsy Network
Brochures: Narcolepsy: A guide to understanding narcolepsy, treatment, social problems, coping methods, research
Costs: costs vary-request order form Also See: NORD NEUROFIBROMATOSIS
141-5th Avenue Suite 7?S New York, NY 10010 (212) 460-8980 Brochures: A handbook for parents
Costs: single copies are free Other Services: referral services, local chapters, information on clinical trials, support groups, audio/ visual materials
Neurofibromatosis, Inc. (NI)
Brochures: Serving NF families
Costs: single copies are free Other Services: referral services, local chapters, information on clinical trials, support groups, audio/ visual materials Also See: NINDS, AGSG, NORD PAIN
PO Box 850 Rocklin, CA 95677 (916) 632-0922 Brochures: Guidelines to selecting pain programs
Video Tapes: ACPA relaxation tape #1 (pain relief & breathing relaxation)
Costs: Costs vary-request order form Other Services: local chapters, support groups, audio/visual materials, newsletter
National Chronic Pain Outreach Association (NCPOA)
Brochures: request publication listing Costs: costs vary-request order form Other Services: information on support groups, audio/visual materials, local chapters, newsletter Also See: NINDS PALSY, PROGRESSIVE SUPRANUCLEAR
C/O David Saks 3737 Courtleigh Drive Randallstown, MD 21133-4827 Brochures: Who and what is SPSP
Costs: costs vary-request order form Services: support groups, referral services, information on clinical trials, audio/visual materials, newsletter Also See: NORD PARKINSON'S DISEASE
60 Bay Street Suite 401 Staten Island, NY 10301 (800) 223-2732 (718) 981-8001 Fax: (718) 981-4399
American Parkinson Disease Association, California Office
Brochures: Basic information about Parkinson's disease
Costs: single copies are free Other services: referral services, local chapters, support groups, information on clinical trials, audio/ visual materials
Center for Neurologic Study (CNS)
Brochures: Parkinson information packet Costs: initial packet is free Other Services: referral services, information on clinical trials, support groups, audio/visual materials
National Parkinson Foundation (NPF)
National Parkinson Foundation, California Office (NPF)
Brochures:
The Parkinson patient (English and Spanish)
Costs: single copies are free Other Services: referral services, local chapters, information on clinical trials, support groups, audio/ visual materials, newsletter
Parkinson's Disease Foundation (PDF)
Brochures: The Parkinson patient at home
Costs: single copies are free Other Services: referral services, information on clinical trials, support groups, audio/visual materials
Parkinson's Educational Program (PEP)
Brochures: request publications listing Costs: single copies are free Other Services: newsletter, referral services, local chapters, support groups, audio/visual materials
The Parkinson's Institute
Other Services: referral services, information on clinical trials, support groups Propath
The Route to Better Management of Parkinson's Disease
Brochures: Coping with Parkinson's disease
Costs: brochures are free Other Services: referral services, support groups, audio/visual materials
United Parkinson Foundation (UPF)
Brochures: Parkinson's disease: A guide for patients (Q & A)
Costs: single copies are free Other Services: support groups, referral services, information on clinical trials, audio/visual materials, newsletter, faxsheets Also See: NINDS, NORD PORPHYRIA
PO Box 1075 Santa Rosa Beach, FL 32459 Brochures: Porphyria: An introduction
Costs: single copies are free Also See: NORD POSTPOLIO SYNDROME
4502 Maryland Avenue St. Louis, MO 63108 (314) 534-0475 Brochures:
Post-polio directory
Other Services: referral services, support groups, newsletter
Polio Survivors Association (PSA)
Brochures: Poliomyelitis fact sheet Reprints of appropriate materials Costs: single copies are free Other Services: referral services, information on clinical trials, support groups
Suncoast Media, Inc.
Other Services: "Post-Polio Syndrome" video documentary Costs: $59.00 plus $3.00 shipping/handling Also See: NORD PRADER-WILLI SYNDROME
2510 S Brentwood Blvd Suite 220 St. Louis, MO 63144 (314) 962-7644 (800) 926-4797 Brochures: request publication listing Costs: costs vary-request order form Other Services: referral services, local chapters, information on clinical trials, support groups, audio/visual materials Also See: NORD PSEUDOTUMOR CEREBRI
1319 Butternut St. Apt 3 Syracuse NY 13208 (800) 926-1230 REFLEX SYMPATHETIC DYSTROPHY SYNDROME
116 Haddon Avenue Suite D Haddonfield, NJ 08033 (609) 795-8845 Brochures:
Help us stop the pain
Costs: costs vary-request order form Other Services: referrals, support groups, audio/ visual materials Also See: NORD REHABILITATION
230 West Monroe Suite 1800 Chicago, IL 60606 (312) 726-6200 Brochures: request publications listing Costs: costs vary-request order form Other Services: referral services, local chapters, support groups
National Institute on Disability
and Rehabilitation Research (NIDRR)
National Rehabilitation
Information Center (NRIC)
Brochures: Spinal cord injury resource guide
Cost: single copies are free Other Services: referral services, local chapters, support groups Also See: AOTA RESTLESS LEGS SYNDROME
1904 Banbury Road Raleigh, NC 27608 (919) 571-1599 RETT SYNDROME
8511 Rose Marie Drive Ft. Washington, MD 20744 (301) 248-7031 Brochures: What is Rett syndrome?
Costs: costs vary-request order form Other Services: referral services, support groups, audio/visual materials Also See: NORD REYE'S SYNDROME
426 North Lewis Street Bryan, OH 43506 (419) 636-2679 Brochures: After Reye's syndrome
Costs: costs vary-request order form Other Services: local chapters, information on clinical trials, support groups, referral services, audio/visual materials SPASMODIC TORTICOLLIS
PO Box 873 Royal Oak, MI 48068 (313) 647-2280 Brochures: Spasmodic torticollis
Costs: single copies are free Other Services: referral services, local chapters, support groups Also See: NORD SPINA BIFIDA
4590 MacArthur Boulevard NW Suite 250 Washington, DC 20007-4226 Books: An introduction to spina bifida
For Children:
You are special-you are the one
Brochures: Achieving bowel continence
Costs: costs vary-request order form Other Services: referral services, local chapters, support groups, audio/visual materials SPINAL INJURIES
500 Morris Avenue Springfield, NJ 07081 (800) 225-0292 (201) 379-2690 in New Jersey Patient Hotline: (800) 526-3456 Brochures: Progress in research
Costs: Contact organization Other Services: information on paralysis cure research
Kent Walsrep National Paralysis Foundation
National Spinal Cord Injury Association (NSCIA)
Brochures: Options: SCI and the future
Fact sheets: What is spinal cord injury?
Costs: costs vary-request order form Other Services: referral services, local chapters, support groups, information on clinical trials, audio/visual materials
Paralyzed Veterans of America (PVA)
Brochures: request a publication listing Costs: costs vary-refer to publication listing Other Services: referral services, local chapters
Spinal Cord Society (SCS)
Brochures: request publication listing Other Services: newsletter, referral services, local chapters, information on clinical trials, support groups, audio/visual materials Also See: NINDS STROKE
7320 Greenville Avenue Dallas, TX 75231 (214) 373-6308 Brochures: Facts about stroke
Costs: single copies are free
American Occupational Therapy Association(AOTA)
Brochures: Occupational therapy is important when you are recovering from stroke Costs: single copies are free Other Services: local chapters
National Stroke Association (NSA)
Brochures: request publication listing Costs: costs vary-request order form Other Services: referral services, local chapters, information on clinical trials, support groups, audio/ visual materials, newsletter, professional symposia
Stroke Club International (SCI)
Other Services: newsletter, patient-oriented information, referral services, local chapters, support groups, educational materials Also See: NINDS STURGE-WEBER SYNDROME
125 East 63rd Street New York, NY 10021 (212) 755-3820 (516) 775-3246 Brochures: Port wine stain pamphlet National Congenital Port Wine Stain Foundation pamphlet Laser information sheet/brochure Costs: single copies are free Other Services: referral services, local chapters, support groups, newsletter
The Sturge-Weber Foundation (SWF)
Brochures: Alternatives to general anesthesia for laser treatment
Costs: costs vary-request order form Other Services: referral services, state liaisons, support groups, newsletter, audio/visual materials, local chapters, research grants, international conference Also See: NORD SYRINGOMYELIA
PO Box 1586 Longview, TX 75606-1586 (903) 236-7079 (800) ASAP-282 Fax: (903) 757-7456 Brochures: Syringomyelia What is it? How can you help?
Cost: single copies are free Other Services: local chapters, information on clinical trials, support groups, audio/visual materials Also See: NORD TARDIVE DYSKINESIA/TARDIVE DYSTONIA
4244 University Way, NE PO Box 45732 Seattle, WA 98145-0732 (206) 522-3166 Also See: NORD TAY SACHS
250 Park Avenue, Suite 1000 New York, NY 10177 (212) 682-5550 Brochures: What you should know about Jewish genetic diseases Other Services: referral services
National Tay-Sachs and Allied Diseases Association (NTSADA)
Brochures: One day at a time
Costs: costs vary-request order form Other Services: support groups, referral services, local chapters, audio/visual materials, information on clinical trials Also See: NORD TINNITUS
PO Box 5 Portland, OR 97207 (503) 248-9985 Brochures: American Tinnitus Association
Costs: costs vary-request order form Other Services: referral services, local chapters, information on clinical trials, support groups, audio/visual materials Also See: NORD TOURETTE SYNDROME
42-40 Bell Boulevard Bayside, NY 11361 (800) 237-0717 (718) 224-2999 Fax: (718) 279-9596 Brochures: request publication listing Costs: costs vary-request order form Other Services: referral services, local chapters, information on clinical trials, support groups, audio/ visual materials, medical information for neurologists, newsletter
Tourette Syndrome Foundation of Canada (TSFC)
Brochures: Questions and answers and Tourette syndrome
Costs: costs vary-request order form Other Services: referral services, newsletter, local chapters, information on clinical trials, support groups, audio/visual materials Also See: NINDS, NORD TRIGEMINAL NEURALGIA
Riverside-Neurology Dept Attn: Bryce Dorweiler 2220 Riverside Ave S Minneapolis, MN 55454 (612) 371-1715 Booklet: Trigeminal Neuralgia Cost: single copies are free
Trigeminal Neuralgia Association (TNA)
Brochures: TNA brochure Cost: single copies are free Other Services: patient-oriented information, newsletter, support groups, information on clinical trials, referral services, local chapters, audio/visual materials TREMOR
833 West Washington Boulevard Chicago, IL 60607 (312)733-1893 Brochures: Tremor fact sheet Costs: single copies are free Other Services: patient-oriented information, referral services, information on clinical trials, newsletter Also See: NAF, NORD, MDA TRISOMY
4625 Lindell Boulevard Suite 501 St. Louis, MO 63108 Brochures: Trisomy 18 - A book for families
Costs: prices vary-request publication list Other Services: patient oriented information materials, referral services, local chapters, support groups, audio/visual materials, newsletter Also See: NORD TUBEROUS SCLEROSIS
8000 Corporate Drive Suite 120 Landover, MD 20785 (800)225-6872 (301) 459-0394 Fax: (301) 459-0394 Brochures: Fact sheet: Tuberous sclerosis
Costs: single copies are free Other Services: referral services, local chapters, information on clinical trials, support groups, audio/visual materials Also See: NINDS, NORD VESTIBULAR DISORDERS
Box 4467 Portland,.OR 97208-4467 (503) 229-7705 Brochures: request publication listing Other Services: referral services, information on clinical trials, support groups, audio/visual materials Also See: NINDS WILLIAMS SYNDROME
PO Box 297 Clawson, MI 48017?0297 (314) 227-4411 Brochures: Facts about Williams (also in Spanish)
Costs: free Other Services: referrals, local chapters, information on clinical trials, support groups, audio/visual materials, newsletter Also See: NORD WILSON'S DISEASE
432 W. 58th Street Suite 614 New York, NY 10019 (212) 523-8717 Fax: (212) 523-8708 Brochures: What is Wilson's disease? Costs: single copies are free Other Services: referral services
Wilson's Disease Association (WDA)
Brochures: Wilson's disease: Questions and answers (three-part series) Other Services: newsletter Also See: NORD MISCELLANEOUS
AAN PUBLICATIONS
2221 University Avenue SE, Suite 335 Minneapolis, MN 55414 (612) 623-8115 Brochures: Neurologist (role of the neurologist) The medical specialty of neurology (career information) Costs: costs vary-request order form ANIMAL RESEARCH
818 Connecticut Avenue, Suite 303 Washington, D.C. 20006 (202) 457-0654 Brochures: request publication listing Costs: costs vary-request order form Other Services: local chapters, audio/visual materials, newsletter
incurably ill for Animal Research iiFAR)
Brochures: request publication listing Costs: costs vary-request order form Other Services: local chapters, newsletter BIRTH DEFECTS
1275 Memaroneck Avenue White Plains, NY 10605 (800)367-6630 Brochures: request publications listing Costs: costs vary-request order form Other Services: referral services, local chapters, audio/visual materials EEG/EVOKED POTENTIALS
21 Second St. SW, Suite 103 Rochester, MN 55902 (507) 288-0100
Brochures: request order form
Brochures: Physicians may order copies of a brochure explaining EEG/evoked potentials to patients
Costs: costs vary-request order form
GENETICS
35 Wisconsin Circle #440 Chevy Chase, MD 20815-7015 (301) 652-5553 (800) 336-GENE Services: referrals, newsletter, support groups, conferences Center for Genetic Studies in Inherited Neurological Disorders
Brochures: Fact sheet on familial spastic paraplegia Cost: single copies are free Other Services: patient-oriented information, referral services
National Society of Genetic Counselors (NSGC)
Services: referrals GRIEF COUNSELING
PO Box 3696 Oak Brook, IL 60522-3696 (708) 990-0010 Brochures: When a child dies
Costs: $10 per 100 plus $3.50 shipping Other Services: audio/visual materials, information on clinical trials, local chapters, newsletters, books MEDICATION
Glenbrook Laboratories 90 Park Avenue New York, NY 10016 Brochures: Reducing the risk of stroke ...aspirin Eli Lilly and Company (ELC)
Services: information on clinical trials
Roche Laboratories (RL)
Brochures: request publication listing Costs: no charge for patient brochures
U.S. Pharmacopeial Convention (USPC)
Brochures: request a publication listing Costs: refer to publication listing Other Services: audio/visual materials MENTAL HEALTH
1021 Prince Street Alexandria, VA 23314 (703) 684-7722 (800) 969-6642 Brochures: request publication listing Costs: prices vary-request order form Other Services: referral services, local chapters, support groups NATIONAL MEDICAL ASSOCIATIONS
1867 Alta Vista Drive PO Box 8650 Ottawa, ON, CANADA K1G OG8 (613) 731-9331 Brochures: request publication listing Costs: costs vary-request order form Other Services: provincial divisions NEUROIMAGING
300 Fairfield Road Wayne, NJ 07470-7358 (201) 292-8043 (201) 292-7358 Brochures: Understanding Your MRI exam ...how does it work?
Costs: small quantities are free Also See: NMSS POLITICAL ACTION
1250 24th Street, NW, Suite 300 Washington, DC 20037 (202) 293-5453 Other Services: newsletter Also See: NORD RARE DISORDERS
110 Summit Avenue Montvale, NJ 07645 (201) 391-9100 Fax: (201) 391-2778 Brochures: Physicians' guide to rare diseases (1,300 page book) Costs: contact company for current costs
Lethbridge Society for Rare Disorders (LSRD)
Services: referrals, local chapters, support groups, audio/visual materials
National Organization for Rare Disorders (NORD)
Brochures: request literature order form Costs: see order form SUPPORT GROUPS
1119 Spring Garden Street Bethleham, PA 18017 (215) 974-9832 Other Services: newsletter
Pritchett and Hull Associates (PHA)
Brochures: request publication listing Costs: costs vary-request order form Other Services: audio/visual materials Well Spouse Foundation
U.S. GOVERNMENT AGENCIES
Alzheimer's Disease Education & Referral Center (ADEAR)
Brochures: Q & A: Alzheimer's disease
Costs: single copies are free. Order form available for multiple copy requests.
Department of Health & Human Services
Brochures: Useful information on Alzheimer's disease
National Health Information Center (NHIC)
Services: provides referrals to organizations for information on various health related topics (i.e., diseases, health education materials, nutrition, exercise etc.).
National Institute of Neurological Disorders and
Brochures: Batten disease-fact sheet
National Sudden Infant Death Syndrome Resource Center (NSIDRS)
Brochures: Crib death
Costs: single copies are free Other Services: referrals, newsletter, bibliographies, educational materials, database searches
Office of Research Reporting
Services: provides information on Down syndrome |
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 Michigan Neurology Institute - East, P.C.
25100 Kelly Road
St. John Office
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