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Annual directory of national organizations: 1993-1994.

General Information

Association for the Care of Children's Health 7910 Woodmont Avenue Suite 300 Bethesda, MD 20814 (301) 654-6549 (301) 986-4553 (FAX)

Canadian Association for Community Living Kinsmen Building York University 4700 Keele Street North York, ON Canada M3J 1P3 (416) 661-9611 (416) 661-5701 (FAX)

Children's Defense Fund 25 E Street NW Washington, DC 20001 (202) 628-8787 (202) 662-3520 (FAX)

Christian Council on Persons with Disabilities 1324 Yosemite Blvd. Modesto, CA 95354 (209) 524-7993

Coalition on Sexuality and Disability, Inc. 122 East 23rd Street New York, NY 242-3900

Council for Exceptional Children 1920 Association Drive Reston, VA 22091-1589 (703) 620-3660 (703) 264-9494 (FAX)

Council on Family Health 225 Park Avenue S 17th Floor New York, NY 10003 (212) 598-3617

Keshet-Jewish Parents of Children with Special Needs 3525 W. Peterson, Suite T-17 Chicago, IL 60659 (312) 588-0551

Learning How, Inc. P.O. Box 35481 Charlotte, NC 28235-5481 (704) 376-4735 (704) 376-5024 (FAX)

MUMS (Mothers United for Moral Support, Inc.)) c/o Julie Gordon 150 Cluster Street Green Bay, WI 54301 (414) 336-5333

National Association of Protection and Advocacy Systems 900 Second Street NE, Suite 221 Washington, DC 20002 (202) 408-9514(202) 408-9520 (FAX)

National Catholic Office for Persons with Disabilities P.O. Box 29113 Washington, DC 20017 (202) 529-2933 (Voice/TDD) (202) 529-4678

National Center for Youth with Disabilities University of Minnesota 420 Delaware Street SE Box 721 Minneapolis, MN 55455-0392 (612) 626-2825 (800) 333-6293 (612) 626-2134 (FAX)

National Council of Guilds for Infant Survival P.O. Box 3586 Davenport, IA 52808 Mailing address only.

National Easter Seals Society 70 East Lake Street Chicago, IL 60601 (312) 726-6200 (312) 726-4258 (TDD) (800) 221-6827

NICHCY (National Information Center for Children and Youth with Disabilities) P.O. Box 1492 Washington, DC 20013 (703) 893-6061 (800) 999-5599 (703) 893-8614 (TDD) (703) 893-1741 (FAX)

National Information System and Clearinghouse Center for Developmental Disabilities University of South Carolina Benson Building Columbia, SC 29208 (800) 922-9234 (800) 922-1107 (in SC) (803) 777-6058 (FAX)

National Organization on Disability 910 16th Street NW, Suite 600 Washington, DC 20006 (202) 293-5960 (202) 229-1187 (in MD) (800) 248-ABLE

NPND

(National Parent Network on Disabilities) 1600 Prince Street, Suite 115 Alexandria, VA 22314 (703) 684-NPND (703) 684-6763 (Voice/TDD)

National Vaccine Information Center--Dissatisfied Parents Together 204-F Mill Street Vienna, VA 22180 (703) 938-DPT3

SIECUS (Sex Information and Education Council Of U.S.) 130 West 42nd Street, Ste. 2500 New York, NY 10036 (212) 819-9770 (212) 819-9776 (FAX)

STOMP (Specialized Training of Military Persons) c/o Washington PAVE 12208 Pacific Highway SW Tamco, WA 98499 (206) 588-1741

Accessible Housing

Center for Accessible Housing North Carolina State University/School of Design Box 8613 Raleigh, NC 27695-8613 (919) 515-3082 (919) 515-3023 (FAX)

Office of Fair Housing and Equal Opportunity 820 First Street NW Washington, DC 20002 (202) 275-0848 (202) 708-4252 (in DC)

Adoption

AASK (Adopt a Special Kid) 3530 Grand Avenue Oakland, CA 94610 (510) 451-1748

Adoptive Families of America 3333 Highway 100N Minneapolis, MN 55422 (612) 535-4829

Children's Adoption Support Services 1039 Evarts Street NE Washington, DC 20017 (202) 362-3264

National Adoption Center 1500 Walnut Street, Suite 701 Philadelphia, PA 19102 (215) 735-9988 (800) TOA-DOPT (215) 735-9410 (FAX)

National Adoption Information 11426 Rockville Pike, Suite 410 ROckville, MD 20852 (301) 231-6512

Career Counseling

ERIC Clearinghouse on Disabilities and Gifted Education 1920 Association Drive Reston, VA 22091-1589 (703) 264-9474 (703) 264-9494 (FAX)

JAN (Job Accommodation Network) West Virginia University 1918 Chestnut Ridge Road, Suite 1 Morgantown, WV 26506-6080 (800) 526-7234 (800) 526-2262 (in Canada) (800) DIA-LJAN (Voice/TDD/Bulletin Board Service) (800) ADA-WORK

JOB (Job Opportunities for the Blind) National Center of the Blind 1800 Johnson Street Baltimore, MD 21230 (410) 659-9314 (800) 638-7518

National Clearinghouse on Postsecondary Education for Individuals with Disabilities HEATH Resource Center 1 Dupont Circle, Suite 800 Washington, DC 20036-1193 (202) 939-9320 (800) 54H-EATH

Partnership for Training and Employment Careers 1620 I Street NW Washington, DC 20006 (202) 887-6120

TASPP (Technical Assistance for Special Populations Program) National Center for Research in Vocational Education (NCRVE) University of Illinois Site 45 Education Building 1310 S. Sixth Street Champaign, IL 61820 (217) 333-0807 (217) 244-5632 (FAX)

Education

AHEAD

(Association on Higher Education and Disability) P.O. Box 21192 Columbus, OH 43221 (614) 488-4972 (Voice/TDD)

National Committee for Citizens in Education 900 Second Street NE, Ste. 8 Washington, DC 20002 (202) 544-9495 (800) NET-WORK

National Information Center for Educational Media 4314 Mesa Grande SE Albuquerque, NM 87108 (505) 265-3591

Legal Assistance

American Bar Association Center on Children and the Law 1800 M Street NW Suite 200 South Washington, DC 20036 (202) 331-2250

DREDF (Disability Rights Education and Defense Fund) 2212 Sixth Street Berkeley, CA 94710 (510) 644-2555

The Bazelow Center 1101 15th Street NW Suite 1212 Washington, DC 20005 (202) 467-5730 (202) 223-0409 (FAX)

National Center for Law and the National Center for Law and the Deaf Gallaudet University 800 Florida Aveneu NE Washington, DC 20002 Mailing address only.

Pike Institute Boston University/School of Law 765 Commonwealth Avenue Boston, MA 02215-1620 (617) 353-2904 (617) 353-2906 (FAX)

Newborns with Illness

Parent Care 9041 Colgate Street Indianapolis, IN 46268 (317) 872-9913

Rare Disorders

Lethbridge Society for Rare Disorders #100B, 515-7 Street S Lethbridge, AB Canada T1J 2G8 (403) 329-0665

National Organization for Rare Disorders (NORD) 100 Route 37 P.O. Box 8923 New Fairfield, CT 06812 (203) 746-6518, (800) 999-NORD

Rehabilitation

Canadian Rehabilitation Council for the Disabled 45 Sheppard Avenue E, Suite 801 Willowdale, ON Canada M2N 5W9 (416) 250-7490 (416) 229-1371 (FAX)

Kinsman Rehabilitation Foundation of British Columbia 2256 West 12th Avenue Vancouver, BC, Canada V6K 2N5 (604) 736-8841 (604) 738-0603 (TDD)

National Rehabilitation Information Center 8455 Colesville Road Silver Spring, MD 20910 (301) 588-9284 (800) 227-0216 (Voice/TDD)

World Rehabilitation Fund 386 Park Avenue S Suite 500 New York, NY 10016-4901 (212) 725-7875

Self-Help

American Self-Help Clearinghouse St. Clares-Riverside Medical Center Denville, NJ 07834 (201) 625-7101 (201) 625-9053 (TDD)

National Self-Help Clearinghouse Grad. School/University Center CUNY 25 West 43rd Street, Room 620 New York, NY 10036 (212) 642-2944

Sibling Support

Siblings for Significant Change United Charities Building 105 E. 22nd Street, Room 710 New York, NY 10010 (212) 420-0776

Siblings Information Network The A.J. Pappanikou Center on Special Education and Rehabilitation: A University Affiliated Program) 1776 Ellington Road South Windsor, CT 06074 (203) 648-1205 (203) 644-2031 (FAX)

Travel and Exchange

Mobility International P.O. Box 3551 Eugene, OR 97403 (503) 343-1284 (Voice/TDD)

Travelin' Talk P.O. Box 3534 Clarksville, TN 37043-3534 (615) 552-6670

Hotlines

DIRECT LINK for the disABLED, Inc. P.O. Box 1036 Solvang, CA 93464 (805) 688-1603 (Voice/TT)

National Digestive Diseases Information Clearinghouse 9000 Rockville Pike Box NDDIC Bethesda, MD 20892 (301) 654-3810 (301) 496-2830 (FAX)

National Jewish Center for Immunology and Respiratory Medicine 1400 Jackson Street Denver, CO 80206-2762 (800) 222-LUNG

National Spinal Cord Injury Hotline Monkebello Hospital 2201 Argonne Drive Baltimore, MD 21218 (800) 526-3456

Social Security Administration Hotline (800) 772-1213 (800) 325-0778 (TDD)

U.S. Architectural Transportation Barriers Compliance Board

For information related to the Americans with Disabilities Act.

(800) USA-ABLE

Acoustic Neuroma

Acoustic Neuroma Association P.O. Box 12402 Atlanta, GA 30355 (404) 237-8023, (404) 237-2704 (FAX)

Agenesis of the Corpus Callosum

ACC Network 86 N. Main St. Orono, ME 04473 (207) 866-2062

Aicardi Syndrome

Aicardi Syndrome Awareness and Support Group 29 Delavan Ave. Toronto, Ontario, Canada, M5P 1T2 (416) 481-4095

Aicardi Syndrome Newsletter, Inc. 5115 Troy Urbana Rd. Casstown, OH 45312 (513) 339-6033 (phone/FAX)

Albinism and Hypopigmentation

National Organization for Albinism and Hypopigmentation (NOAH) 1500 Locust St., Suite 1816 Philadelphia, PA 19102 (800) 473-2310, (215) 545-2322

Amputation

National Amputation Foundation 73 Church St. Malverne, NY 11565 (516) 887-3600, (516) 887-3667

Amylotrophic Lateral Sclerosis (Lou Gehrig's Disease)

Amyotrophic Lateral Sclerosis Association 21021 Ventura Blvd., Suite 321 Woodland Hills, CA 91364 (800) 782-4747

Angelman Syndrome

Angelman Syndrome Foundation 5950-77 SW 20th Ave. Gainesville, FL 32607 (904) 332-3303 (phone/FAX)

Anorectal Malformations

Pull-thru Network 1 Circle Rd. Darien, CT 06820 (203) 655-6288

Aphasia (inability to form words)

National Aphasia Association Young People's Network P.O. Box 1887 Murray Hill Station New York, NY 10156-0611 (800) 922-4622

Arnold-Chiari Syndrome

Arnold-Chiari Family Network 67 Spring Street Weymouth, MA 02188 (617) 337-2368

Arthritis

American Juvenile Arthritis Organization 1314 Spring St. NW Atlanta, GA 30309 (404) 872-7100, (404) 872-0457 (FAX)

Arthrogryposis

Avenues National Support Group for Arthrogryposis Multiplex Congenita P.O. Box 5192 Sonora, CA 95370 (209) 928-3688

Asthma and Allergy

Asthma and Allergy Foundation of America 1125 15th St. NW, Suite 502 Washington, DC 20005 (800) 7AS-THMA (202) 466-8940 (FAX)

Ataxia (loss of coordinated movement)

National Ataxia Foundation 750 Twelve Oaks Center 15500 Wayzata Blvd. Wayzata, MN 55391 (612) 473-7666, (612) 473-9289 (FAX)

Attention Deficit Disorder

National Attention Deficit Disorder Assn. (NADDA) (local support groups) 19262 Jamboree Road Irvine, CA 92715 (membership in NADDA) P.O. Box 488 West Newbury, MA 01985 (800) 487-2282

Children with Attention Deficit Disorders (C.H.A.D.D.) 499 N.W. 70th Ave., Suite 308 Plantation, FL 33317 (305) 587-3700, (305) 587-4599 (FAX)

Autism

Autism Network International (ANI) P.O. Box 1545 Lawrence, KS 66044

Autism Society of America 7910 Woodmont Ave., Suite 650 Bethesda, MD 20814 (800) 3AU-TISM, (301) 657-0881 (301) 657-0869 (FAX)

National Autism Hotline/Autism Services Center 605 Ninth St. Prichard Building P.O. Box 507 Huntington, WV 25710-0507 (304) 525-8014, (304) 525-8026 (FAX)

Families of More Able Autistic People (MAAP) P.O. Box 524 Crown Point, IN 46307

Batten's Disease

Batten's Disease Support and Research Association 2600 Parsons Avenue Columbus, OH 43207 (800) 448-4570

Beckwith-Wiedemann Syndrome

Beckwith-Wiedemann Support Network 3206 Braeburn Circle Ann Arbor, MI 48108 (313) 973-0263, (313) 973-9721 (FAX)

Birth Defects

Association of Birth Defect Children Orlando Executive Park 5400 Diplomat Circle, Suite 270 Orlando, FL 32810 (407) 629-1466 (phone/FAX)

March of Dimes Birth Defects Foundation 1275 Mamaroneck Ave. White Plains, NY 10605 (914) 428-7100, (914) 428-8203 (FAX)

National Birth Defects Center 30 Warren Street Boston, MA 02135 (617) 787-5958, (617) 787-9019 (FAX)

National Network to Prevent Birth Defects Box 15309 SE Station Washington, DC 20003 (202) 543-5450

Brain Damage

Andrew Blake Foundation Box 67A9, Row 1 Winona, MN 55987 (507) 452-5734

Brain Diseases and Disorders (general)

Children's Brain Diseases Foundation 350 Parnassus Ave., Suite 900 San Francisco, CA 94117 (415) 565-6259, (415) 863-3452 (FAX)

Fighters for Encephaly Defects Support (FEDS) 3032 Brereton St.. Pittsburgh, PA 15219 (412) 687-6437

Brain Tumor

American Brain Tumor Association 720 River Rd., Suite 146 Des Plaines, IL 60018 (708) 827-9910 (800) 886-2282 (patient line) (708) 827-9918 (FAX)

Cancer

American Cancer Society 1599 Clifton Rd. NE Atlanta, GA 30329-4251 (800) ACS-2345

AMC Cancer Information Center 1600 Pierce St. Lakewood, CO 80214 (800) 525-3777

Candlelighters Childhood Cancer Foundation 7910 Woodmont Ave., Suite 460 Bethesda, MD 20814 (800) 366-2223, (301) 718-2686 (FAX)

National Cancer Institute Cancer Info. Resource Branch 9000 Rockville Pike Bldg. 31, Room 10A-16 Bethesda, MD 20892 (800) 4-CANCER

Familial Polyposis Registry Mount Sinai Hospital 500 University Ave., Suite 1157 Toronto, ON Canada M5G 1X5 (416) 586-8334

G.I. Polyposis and Hereditary Colon Cancer Registry Ctr for Medical Genetics, Johns Hopkins Hospital. 600 N. Wolfe St. Baltimore, MD 21287-4922 (410) 955-3875

Intestinal Multiple Polyposis and Colorectal Cancer (IMPACC) 1008-101 Brinker Drive Hagerstown, MD 21740 (301) 791-7526

Corporate Angel Network (CAN) Westchester County Airport Building 1 White Plains, NY 10604 (914) 328-1313, (914) 328-3938 (FAX)

Cardio-Facio-Cutaneous Syndrome

CFC Support Network 157 Alder Ave. McKee City, NJ 08232 (609) 646-5606

Cerebral Palsy

United Cerebral Palsy Association 1522 K Street NW, #1112 Washington, D.C. 20005 (800) 872-5827, (202) 842-1266 (202) 842-3519 (FAX)

Charcot-Marie-Tooth Disease

Charcot-Marie-Tooth (CMT) International 1 Springbank Drive St. Catharines, ON, Canada L2S 2K1 (416) 687-3630

Charcot-Marie-Tooth Association Crozer Mills Enterprise Center 601 Upland Ave., Upland, PA 19015 (215) 499-7486, (215) 489-7429 (FAX)

CHARGE Syndrome *

CHARGE Syndrome Foundation, Inc. Coloboma of the eye Heart malformations Atresia of the Choanae (nasal) Retardation of growth and/or development Genital Hypoplasia Ear anomalies 2004 Parkade Blvd. Columbia, MO 65202 (314) 442-7604

Children who have Died

Compassionate Friends P.O. Box 3696 Oak Brook, IL 60522-3696 (708) 990-0010, (708) 990-0246 (FAX)

A.M.E.N.D. (Aiding Mothers & Fathers Experiencing Neonatal Death) 4324 Berrywick Terrace St. Louis, MO 63128 (314) 487-7582

Chromosome 9p-

Support Group for 9p- 675 N. Round Table Drive Las Vegas, NV 89110 (702) 453-0788

Support Group for Monosomy 9p 43304 Kipton Nickle Plate Road La Grange, OH 44050 (216) 775-4255

Trisomy 9 International Parent Support (TIPS) Children's Hospital of Michigan 3901 Beaubien Blvd. Detroit, Mil 48201-2196 (313) 745-4513

Chromosomes 18 and 13

Chromosome 18 Registry & Research Society 6302 Fox Head San Antonio, TX 78247 (512) 657-4968 (phone/FAX)

Support Organization for Trisomy 18, 13 and Related Disorders 2982 S. Union St. Rochester, NY 14624 (716) 594-4621

Chromosome Deletion

Chromosome Deletion Outreach P.O. Box 532 Center Moriches, NY 11934 (516) 878-3510

Chronic Dizziness and Balance Disorders

Pen Pal Support Group for Chronic Dizziness & Balance Disorders Box 305 Elliot, IA 51532 (712) 767-2325

Chronic Illness

Parents of Chronically Ill Children 1527 Maryland St. Springfield, IL 62702 (217) 522-6810

Families of Children Under Stress (FOCUS) P.O. Box 1058 Conyers, GA 30207 (404) 483-9845

Cleft Palate

Cleft Palate Foundation 1218 Grandview Ave Pittsburgh, PA 15211 (800) 24-CLEFT, (412) 481-1376 (412) 481-0847 (FAX)

Prescription Parents, Inc. P.O. Box 161 W. Roxbury, MA 02132 (617) 527-0878

Cockayne Syndrome

Share and Care 1294 S Street North Valley Stream, NY 11580 (516) 825-2284

Coffin-Lowry Syndrome

Coffin-Lowry Syndrome Foundation 6790 N.E. Day Road W Bainbridge Island, WA 98110 (206) 842-1523

Cooley's Anemia

Cooley's Anemia Foundation 105 East 22nd Street, Suite 911 New York, NY 10010 (212) 598-0911, (212) 598-4892 (FAX)

Cornelia de Lange Syndrome

Cornelia de Lange Syndrome Foundation 60 Dyer Avenue Collinsville, CT 06022-1201 (800) 223-8355, (800) 753-CDLS (203) 693-0159, (203) 693-6819 (FAX)

Craniofacial Disorders

AboutFace U.S.A. 1002 Liberty Ln. Warrington, PA 18976 (800) 225-FACE (215) 491-0603 (FAX)

AboutFace 99 Crowns Lane, 3rd Floor Toronto, ON Canada M5R 3P4 (416) 944-FACE (416) 944-2488 (FAX)

FACE of Sarasota, Inc. Bernice Brooks Bergen, exec. dir. P.O. Box 1424 Sarasota, FL 34230 (813) 955-9250 (813) 923-2929 (FAX)

Children's Craniofacial Association 10210 N. Central Expressway Suite 230, LB37 Dallas, TX 75231 (800) 535-3643, (214) 368-3590 (214) 368-3599 (FAX)

Let's Face It P.O. Box 711 Concord, MA 01742 (508) 371-3186

FACES--National Association for the Craniofacially Handicapped P.O. Box 11082 Chattanooga, TN 37401 (800) 332-2373, (615) 267-3124 (FAX)

National Foundation for Facial Reconstruction 317 East 34th Street, 9th Floor New York, NY 10016 (800) 422-FACE, (212) 263-6656 (212) 263-7534 (FAX)

Hemifacial Microsomia/Goldenhar Syndrome Family Support Network 84 Gleniffer Hill Rd. Richboro, PA 18954 (215) 364-3199

Cri Du Chat (Cat Cry) Syndrome

The 5p- Society 11609 Oakmont Overland Park, KS 66210 (913) 469-8900

Crohn's Disease and Ulcerative Colitis

Crohn's & Colitis Foundation of America 444 Park Ave. S, 11th Floor New York, NY 10018 (800) 343-3637, (212) 779-4098 (FAX)

Cushing Syndrome

National Cushing Syndrome Association 4645 Van Nuys Blvd., Suite 104 Sherman Oaks, CA 91403 (818) 788-9239, (818) 788-2413 (FAX)

Cyclic Vomiting Syndrome

Cyclic Vomiting Syndrome Association 13180 Caroline Court Elm Grove, WI 53122 (414) 784-6842, (414) 821-5494 (FAX)

Cystic Fibrosis

Cystic Fibrosis Foundation 6931 Arlington, Rd. Bethesda, MD 20814 (800) FIG-HTCF, (301) 951-4422, (301) 951-6378 (FAX)

Cystinosis

Cystinosis foundation 1212 Broadway, Suite 830 Oakland, CA 94612 (800) 392-8458

Cytochrome C Oxidase Deficiency

Cytochrome C Oxidase Deficiency

Parental Research and Support Foundation 106 Major St. Aliquippa, PA 15001 (412) 375-8347

Diabetes

American Diabetes Association National Service Center 1660 Duke St. Alexandria, VA 22314 (800) 232-3472, (703) 549-1500 (703) 683-2890 (FAX)

Canadian Diabetes Association 15 Toronto St., Suite 1001 Toronto, ON Canada M5C 2E3 (416) 363-3373, (416) 363-3393 (FAX)

Juvenile Diabetes Foundation International 432 Park Ave. S, 16th Floor New York, NY 10016 (800) 533-2873, (212) 889-7575 (212) 532-8791 (FAX)

DiGeorge Syndrome

Information and Support for DiGeorge Syndrome Families 4075-B Miramar St. La Jolla, CA 92037 (619) 453-8340

Down Syndrome

Association for Children with Down Syndrome 2616 Martin Ave. Bellmore, NY 11710 (516) 221-4700, (516) 221-4311 (FAX)

Canadian Down Syndrome Society 12837 76th Ave., Suite 206 Surrey, BC, Canada V3W 2V3 (604) 599-6009, (604) 599-6165 (FAX)

Caring Inc. P.O. Box 400 Milton, WA 98354 (206) 922-8607

National Down Syndrome Congress 1605 Chantilly Drive, Suite 250 Atlanta, GA 30324 (800) 232-6372, (404) 633-1555 (404) 633-2817 (FAX)

National Down Syndrome Society 666 Broadway, Suite 810 New York, NY 10012 (800) 221-4602, (212) 460-9330 (212) 979-2873 (FAX)

Dysautonomia Foundation

Dysautonomia Foundation 20 E. 46th Street, Rm. 302 New York, NY 10017 (212) 949-6644, (212) 682-7625 (FAX)

Dyslexia

Dyslexia Research Institute, Inc. 4745 Centerville Road Tallahasse, FL 32308 (904) 893-2216, (904) 893-2440 (FAX)

The Orton Dyslexia Society 8600 La Salle Rd. Chester Bldg., Suite 382 Baltimore, MD 21286-2044 (800) 222-3123, (410) 296-0232 (410) 321-5069 (FAX)

Dystonia

Dystonia Medical Research Foundation 1177 W. Hastings St., Suite 2000 Vancouver, BC Canada VCZ 2KE (604) 661-4886

Dystonia Medical Research Foundation One East Wacker Drive, Suite 2900 Chicago, IL 60601-2001 (312) 755-0198, (312) 321-5710 (FAX)

Ectodermal Dysplasia

National Foundation for Ectodermal Dysplasia 219 E. Main P.O. Box 114 Mascoutah, IL 62258-0114 (618) 566-2020, (618) 566-4718 (FAX)

Ehlers-Danlos Syndrome

Ehlers-Danlos National Foundation P.O. Box 1212 Southgate, MI 48195 (313) 282-0180, (313) 282-2793 (FAX)

Eosinohilic Myaglia Syndrome

Eosinohilic Myaglia Syndrome Support Group c/o T.V. Workshop 3637 Green Rd. Beechwood, OH 44122

Epilepsy

Epilepsy Foundation of America (EFA) 4351 Garden City Drive Landover, MD 20785-2267 (800) EFA-1000, (301) 459-3700 (301) 577-4941 (FAX)

Evans Syndrome

Evans Syndrome Support and Research Group 5630 Devon St. Port Orange, FL 32127 (904) 760-3031, (904) 761-6008 (FAX)

Extracorporeal Membrane Oxygenation

ECMO Moms and Dads International Parent Support P.O. BOx 53848 Lubbock, TX 79453 (806) 889-3877, (806) 745-8130

Fanconi Anemia

Canadian Fanconi Anemia Research Fund 85 Ormond Drive Oshawa, ON, Canada L1G 6T3

Fanconi Anemia Support Group 66 Club Road, Suite 390 Eugene, OR 97401 (503) 687-4658, (503) 484-0892 (FAX)

Fibular Hemimelia

Superkids Newsletter 60 Clyde St. Newton, MA 02160

Fragile X Syndrome

National Fragile X Foundation 1441 York St., Suite 215 Denver, CO 80206 (800) 688-8765, (303) 333-6155 (303) 333-4369 (FAX)

Freeman-Sheldon Syndrome

Freeman-Sheldon Parent Support Group 509 E. Northmont Way Salt Lake City, UT 84103 (801) 364-7060

Galactosemia

Parents of Galactosemic Children 20981 Solano Way Boca Raton, FL 33433 (407) 852-0266

Gaucher Disease

National Gaucher Foundation 19241 Montgomery Village Ave., E-21 Gaithersburg, MD 20879 (800) 925-8885, (301) 990-4898 (FAX)

Genetic Conditions (general)

Alliance of Genetic Support Groups 35 Wisconsin Cr. #440 Chevy Chase, MD 20815-7015 (800) 336-GENE, (301) 652-5553 (301) 654-0171 (FAX)

National Foundation for Jewish Genetic Diseases 250 Park Avenue, Suite 1000 New York, NY 10017 (212) 371-1030

Hereditary Disease Foundation 1427 7th Street, Suite 2 Santa Monica, CA 90401 (310) 458-4183, (310) 458-3937 (FAX)

Glycogen Storage Disease

Association for Glycogen Storage Disease P.O. Box 896 Durant, IA 52747 (319) 785-6038 (phone/FAX)

Group B Strep

Group B Strep Association P.O. Box 16515 Chapel Hill, NC 27516 (919) 932-5344

Growth Disorders (general)

Human Growth Foundation 7777 Leesburg Pike Falls Church, VA 22043 (800) 451-6434, (703) 883-1773 (703) 883-1776 (FAX)

Guillain-Barre Syndrome

Guillain-Barre Syndrome Foundation International P.O. Box 262 Wynnewood, PA 19096 (215) 667-0131, (215) 667-7036 (FAX)

Hallerman-Streiff Syndrome

Hallerman-Streiff Support Group 1367 Beulah Park Drive Lexington, KY 40517 (606) 273-6928

Head Injuries

National Head Injury Foundation 1776 Massachusetts Avenue, NW, Suite 100 Washington, DC 20036-1904 (202) 296-6443 (800) 444-6443 (helpline) (202) 296-8850 (FAX)

Hearing Impairments

HEAR Now 4001 S. Magnolia Way, Suite 100 Denver, CO 80237 (800) 648-HEAR (Voice/TDD) (800) 648-HEAR

National Captioning Institute 5203 Leesburg Pike Falls Church, VA 22041 (800) 533-WORD (800) 321-TDDS (TDD) (703) 998-2400 (voice/TDD) (703) 998-2458 (FAX)

Alexander Graham Bell Association for the Deaf 3417 Volta Place NW Washington, DC 20007-2778 (202) 337-5220 (voice/TTY)

American Society for Deaf Children (ASDC) 814 Thayer Avenue Silver Spring, MD 20910 (800) 942-ASDC

Auditory-Verbal International, Inc. 6 South Third St., Suite 305 Easton, PA 18042 (215) 253-6616, (215) 253-4434 (TDD) (215) 253-6709 (FAX)

Better Hearing Institute P.O. Box 1840 Washington, DC 20013 (800) EAR-WELL (voice/TDD) (703) 750-9302 (FAX)

Canadian Hearing Society 271 Spadina Road Toronto, ON Canada M5R 2V3 (416) 964-9595, (426) 964-0023 (TDD) (416) 964-2066 (FAX)

International Organization for the Education of the Hearing-Imparied 3417 Volta Place NW Washington, DC 20007 (202) 337-5220 (Voice/TDD_

John Tracy Clinic 806 W. Adams Blvd. Los Angeles, CA 90007 (800) 522-4582 (voice/TDD) (213) 748-5481, (213) 747-2924 (TTY) (213) 749-1651 (FAX)

LISTEN, Inc. P.O. Box 27213 Temple, AZ 85285 (602) 921-3886

National Association for the Deaf (NAD) 814 Thayer Ave. Silver Spring, MD 20910-4500 (301) 587-1788, (301) 587-1789 (TDD) (301) 587-1791 (FAX)

National Cued Speech Association P.O. Box 31345 Raleigh, NC 27622 (919) 828-1218 (voice/TDD) (919) 828-1862 (FAX)

International Hearing Society 20361 Middlebelt Rd. Livonia, MI 48152 (800) 521-5247, (313) 478-2610 (313) 478-4520 (FAX)

National Information Center onm Deafness Gallaudet University 800 Florida Ave. NE Washington, DC 20002-3695 (202) 651-5051, (202) 651-5052 (TDD) (202) 651-5054 (FAX)

National Technical Institute for the Deaf Rochester Institute of Technology Lyndon Baines Johnson Building 52 Lomb Memorial Drive Rochester, NY 14623-5604 (716) 475-6400, (716) 475-6500 (FAX)

Self Help for Hard of Hearing People, Inc. (SHHH) 7800 Wisconsin Ave. Bethesda, MD 20814 (301) 657-2248, (301) 657-2249 (TDD) (301) 913-9413 (FAX)

Signing Exact English (SEE) Center for the Advancement of Deaf Children P.O. Box 1181 Los Alamitos, CA 90720 (310) 430-1467, (310) 795-6614 (FAX)

TRIPOD GRAPEVINE 2901 N. Keystone St. Burbank, CA 91504 (800) 352-8888 (voice/TDD) (818) 972-2090 (FAX)

VOICE for Hearing-Impaired Children 124 Eglinton Avenue W, Suite 420 Toronto, ON Canada M4R 2G8 (416) 487-7719, (416) 487-7423 (FAX)

Deafpride, Inc. 1350 Potomac Ave. SE Washington, DC 20003 (202) 675-6700 (voice/TDD) (202) 547-0547 (FAX)

Captioned Films & Videos for the Dea Modern Talking Picture Services 5000 Park Street N St. Petersburg, FL 33709 (800) 237-6213, (813) 541-7571 (813) 545-8782 (FAX)

Deaf-REACH 3521 12th Street NE Washington, DC 20017 (202) 832-6681, (202) 832-8454 (FAX)

Heart Disorders

American Heart Association 7272 Greenville Ave. Dallas, TX 75231-4596 (214) 373-6300, (214) 706-1341 (FAX)

Heart, Lung and Blood Disorders

National Heart, Lung and Blood Institute P.O. 30105 Bethesda, MD 20824-0105 (301) 251-1222

Hemochromatosis

Hemochromatosis Foundation P.O. Box 8569 Albany, NY 12208 (518) 489-0972

Hemophilia

Canadian Hemophilia Society 1450 City Councillors, Ste. 840 Montreal, PQ Canada H3A 2E6 (514) 848-0503, (515) 848-9661 (FAX)

National Hemophilia Foundation (NHF) 110 Greene St., Rm. 303 New York, NY 10012 (212) 219-8180, (212) 966-9247 (FAX)

Histioclytosis

Histiocytosis Association of America 609 New York Rd. Glassboro, NJ 08028 (800) 548-2758, (609) 881-4911 (609) 589-6614 (FAX)

as about their computer bulletin board service

Huntington's Diease

Huntington's Disease Society of America 140 W. 22nd Street, 6th Fl. New York, NY 10011-2420 (212) 242-1968, (212) 243-2443 (FAX)

Hydrocephalus Association 870 Market Street, Suite 955 San Francisco, CA 94102 (415) 776-4713

National Hydrocephalus Foundation 400 N. Michigan Ave., Suite 1102 Chicago, IL 60611-4102 (815_ 467-6548

Hydrocephalus Support Group P.O. Box 4236 Chesterfield,d MO 63006 (314) 532-8228

Guardians of Hydrocephalus Research Foundation 2618 Avenue Z Brooklyn, NY 11235 (800) 458-8655, (718) 743-4473 (718) 743-1171 (FAX)

Immune Deficiency

Immune Deficiency Foundation (IDF) P.O. Box 586 Columnbia, MD 21045 (301) 730-8837

Incontinence

Help for Incontinent People P.O. Box 544 Union, SC 29379 (803) 579-7900, (803) 579-7902 (FAX)

Simon Foundation for Continence P.O. Box 815 Wilmette, IL 60091 (800) 23-SIMON (708) 864-9758 (FAX)

Intestinal Pseudo- Obstruction

American Pseudo-Obstruction and Hirschsprung Disease Society, Inc. P.O. Box 772 Medford, MA 02155 (617) 395-4255, (617) 396-6868 (FAX)

Intraventricular Hemorrhage

I.V.H. Parents P.O. Box 56-1111 Miami, FL 33256-1111 (305) 232-0381, (305) 232-9890 (FAX)

Joubert Syndrome

Joubert Syndrome Parents-In-Touch Network 12348 Summer Meadow Road Rock, MI 49880 (906) 359-4707

Kidney Disorders

Polycystic Kidney Research Foundation (PKR) 922 Walnut ST., Suite 411 Kansas City, MO 64106 (800) PKD-CURE (816) 421-1869, (816) 421-7208 (FAX)

American Kidney Fund 6110 Executive Blvd., Suite 1010 Rockville, MD 20852 (800) 638-8299 (301) 881-0898 (FAX)

National Kidney Foundation 30 East 33rd Street, 11th Floor New York, NY 10016 (800) 622-9010, (212) 889-2210

Klippel-Trenaunay Support Group 4610 Wooddale Ave. Edina, MN 55454 (612) 925-2596

Lactic-Acidosis

Lactic-Acidosis Support Group P.O. Box 480282 Denver, CO 80248-0282 (303) 287-4953

Landau-Kleffner Syndrome

C.A.N.D.L.E. Support Group 4414 McCampbell Drive Montgomery, AL 36106 (205) 271-3947) (phone/FAX)

Laurence-Moon-Bardet-Biedl Syndrome

Laurence-Moon-Bardet-Biedl Syndrome Network 18 Strawberry Hill Windsor, CT 06095 (203) 688-7880

Learning Disabilities

Learning Disabilities Association of America 4156 Library Rd. Pittsburgh, PA 15234 (412) 341-1515, 341-8077 (412) 344-0224 (FAX)

Learning Disabilities Association of Canada 323 Chapel St., Suite 200 Ottawa, ON Canada K1N 7Z2 (613) 238-5721, (613) 253-5391 (FAX)

National Center for Learning Disabilities 381 Park Ave. S, Suite 1420 New York,NY 10016 (212) 545-7510 (212) 545-9665 (FAX)

Leigh's Disease

National Leigh's Disease Foundation 613 Childs Street P.O. Box 2222 Corinths, MS 38834 (601) 287-8069, (601) 286-2551 (FAX)

Leprosy

American Leprosy Missions 1 ALM Way Greenville, SC 29601 (800) 543-3131, (800) 271-7040 (803) 271-7062 (FAX)

Leukemia

Leukemia Society of America 600 Third Ave., 4th Floor New York, NY 10016 (212) 573-8484, (212) 856-9686 (FAX)

Leukodlystrophy

United Leukodystrophy Foundation 2304 Highland Drive Sycamore, IL 60178 (800) 728-5483, (815) 895-3211 (815) 895-2432 (FAX)

Lissencephaly, Pachygyria and Agyria

Lissencephaly Network 716 Autumn Ridge Lane Fort Wayne, IN 46804 (215) 432-4310

Liver Disorders

American Liver Foundation 1425 Pompton Ave. Cedar Grove, NJ 07009 (800) 223-0179, (201) 256-3214

Lowe Syndrome

Lowe Syndrome Association 222 Lincoln St. West Lafayett, IN 47906 (317) 743-3634

Lung Disease

American Lung Association 1740 Broadway New York, NY, 10019 (212) 315-8700, (212) 265-5642 (FAX)

Lupus Erythematosis

The American Lupus Society 3914 Del Amop Blvd., Suite 922 Torrance, CA 90503 (800) 331-1802 (Info line)s (310) 542-8891

Lupus Foundation of America, Inc. 4 Researchd Place, Suite 180 Rockville, MD 20850-3226 (301) 670-9292, (800) 558-0121 (800) 558-0231 (Spanish) (301) 670-9485 (FAX)

Lynne Disease

Lynne Disease Foundation 1 Financial Plaza Gold Building, 18th Floor Hartford, CT 06103 (203) 525-2000, (203) 525-8425 (FAX)

Macular Diseases

Association for Macular Diseases, Inc. 210 East 64th St. New York, NY 10021 (212) 605-3719

Malignant Hyperthemia

Malignant Hyperthemia Association of United States (MHAUS) P.O. Box 191 Westporo, CT 06881-0191 (203) 847-0407, (203) 840-1772 (FAX)

Maple Syrup Urine Disease

Maple Syrup Urine Disease Family Support Group 8017 Jonestown Rd. Harrisburg, PA 17112-9715 (717) 652-1386

Marfan Syndrome

National Marfan Foundation 382 Main Street Port Washington, NY 11050 (800) 8-MARFAN (516) 883-8712 (PHONE/FAX)

Medium-Chain Acyhl-CoA Dehydrogenase Deficiency

Support Group for Medium-Chain Acyl-CoA Dehydrogenase Deficiency (MCAD) 805 Montrose Drive Greensboro, NC 27410 (919) 547-0196

Mental Illness

Academy of Clinicald Mental Health Counselors 5999 Stevenson Ave. Alexandria, VA 22304 (703) 823-9800, ext. 384 (703) 823-0252 (FAX)

Federation of Families for Children's Mental Health 1021 Prince St. Alexandria, VA 22314-2971 (703) 684-7710, (703) 684-7722 (703) 684-5968 (FAX)

National Mental Health Association 1021 Prine St. Alexandria, VA 22314-2971 (800) 969-6642. (703) 684-7722 (703) 684-5968 9(FAX)

Mental Retardation

The Arc (a national organization on mental retardation) 500 E. Border ST., Suite 300 PO Box 1047 Arlingtom, TX 76010 (817) 261-60003, 433-5255 (817) 227-0553 (TDD) (817) 277-3491 (FAX)

Canadian Association for Community Living 4700 Keele St. Kinsman Building North York, ON Canada 437 7P3 (416) 661-9611, (416) 661-5701 (FAX)

Mental Retardation/Mental Illness

National Organization of the Dually Diagnwsed (NADD) 110 Prince Street Kingston, NY 12401 (914) 331-4336, (800) 331-5362

Moebius Syndrome

Moebius Syndrome Support Group 39521 Rowen Court Palmdale, CA 93551 (805) 267-2570

Mucopolysaccharidosis

National Mucopolysaccharidosis Society 17 Kraemer St. Hicksville, NY 11801 (516) 931-6338 (516) 822-2041 (FAX)

Zain Hansen M.P.S. Foundation P.O. Box 4768 Arcata, CA 95521 (800) 767-3121, (707) 822-5421

Multiple Sclerosis

National Multiple Sclerosis Society 733 3rd Ave. New York, NY 10017 (800) 532-7667, (212) 986-3240 (212) 986-7981 (FAX)

Muscular Dystrophy

Muscular Dystrophy Association 3300 E. Sunshine Drive Tuscon, AZ 85718-3208 (602) 529-2000, (602) 529-5300 (FAX)

Myasthenia Gravis

Myasthenia Gravis Foundation (MGF) 53 W Jackson Blvd., Suite 660 0Chicago, IL 60604 (800) 541-5454, (312) 427-6252 (312) 427-8437 (FAX)

Myeloproliferative Disease

MPD Research Center, Inc. 2220 Tieman Ave. Baychester, NY 10469 (800) HELP-MPD, (212) 697-5252

Myeloproliferation Disease Patient Network and Support Group M.P.D. Research Center 2220 Tieman Ave. Baychester, NY 10469 (718) 231-0270, (718) 881-1905 (FAX)

Mywclonus

Myoclonus Families United 1564 East 34th St. Brooklyn, NY 11234 (718) 252-2133

Nager and Miller Syndromes

Nager and Miller Sndromes Support 333 Country Lane Glenview, IL 60025 (708) 724-6449

Narcolepsy

American Narcolepsy Association 425 California St. Suite 201 San Francisco, CA 94104 (415) 788-3303

Neurofibromatosis

National Neurofibromatosis Foundation 141 Fift Avenue, Suite 7-S New York, NY 10010-7105 (800) 323-7938, (212) 460-8980 (212) 529-6094 (FAX)

Neurological Disorders

National Institute of Neurological Disorders and Stroke 9000 Rockville Pike, Bldg. 31, Rm. 8A-16 Bethesda, MD 20892 (301) 496-5751, (301) 402-2186 (FAX)

Neurometabolic Disorders

Association of Neurometabolic Disorders 5223 Brookfield Lane Sylvania, OH 43560-1809 (419) 885-1497

Newborns with Illness

Parent Care, Inc. 9041 Colgate St. Indianapolis, In 46268-1210 (317) 872-9913

Niemann-Pick Disease

National Niemann-Pick Disease Foundation, Inc. 22201 Riverpoint Trail Carrollton, VA 23314 (804) 357-6774

Noonan Syndrome

Noonan Syndrome Support Group 1278 Pine Ave. San Jose, CA 95125 (408) 723-5188

Organic Acidemia

Organic Acidemia Association, Inc. 522 Lander St. Reno, NV 89509 (702) 322-5542, (702) 323-3869 (FAX)

Orthopedic and Burn Problems

International Shriners Headquarters 2900 Rocky Point Drive Tampa, FL 33607 (800) 282-9161 (in FL) (800) 237-5055 (US) (800) 361-7255 (CAN) (813) 281-0300 (813) 287-8214 (FAX)

Osteogenis Imperfecta

Osteogenesis Imperfecta Foundation, Inc. 5005 W. Laurel St., Suite 210 Tampa, FL 33607 (813) 2820-1161, (813) 287-8241 (FAX)

Ostomy

United Association 366 Executive Park, Suite 120 Irvine, CA 92714-6744 (800) 826-0826 (714) 660-8624, (714) 660-9262 (FAX)

Oxalosis & Hyperoxaluria

Oxalosis & Hyperoxaluria Found. P.O. Box 1632 Kent, WA 98035 (206) 631-0386 (800) 484-9698 (#5100)

Pallister-Killian Syndrome

Pallister-Killian Family Support Group 4255 Fifth Ave. SW Naples, FL 33999 (813) 455-0400

Parkinson Disease

National Parkinson Foun< tion 1501 Ninth Ave. NW Miami, FL 3316 (800) 327-4545, (800) 433-7022 (in FL) (305) 548-4403 (FAX)

Polymyositis & Dermatomyositis

National Support Group for Polymyositis & Dermatomyositis

P.O. Box 890 Cooperstown, NY 13326 (607) 547-5970

Porphyria

American Porphyria Foundation P.O. BOx 22712 Houston, TX 77227, (713) 266-9617

Prader-Willi Syndrome

Prader-Willi Syndrome Association 1821 University Ave. W, #N356 St. Paul, MN 55104 (800) 926-4797, (612) 641-1955 (612) 641-1952 (FAX)

Proteus Syndrome

Proteus Syndrome 805 E. 121st Terr. Kansas City, MO 64146 (503) 244-7404, (503) 245-0626 (FAX)

Psoriasis

National Psoriasia Foundation 6600 SW 92nd, Suite 300 Portland, OR 97223 (301) 530-0354

Purine 24

Purine 24, Inc. 5424 Beech Ave. Bethesda, MD 20814 (301) 530-0354

Reflex Sympahetic Dystrophy Syndrome

Reflex Sympathetic Dystrophy Association 116 Haddonfield, NJ 08033 (609) 795-8845 (phone/FAX)

Rett Syndrome

International Rett Syndrome Association 9121 Piscataway Rd., Suite 2B Clinton, MD 20735 (301) 856-3334

Rubinstein-Taybi Syndrome

Rubinstein-Taybi Parent Group P.O. Box 146 Smith Centers, KS 66967 (913) 697-2984

Russell-Silver Syndrome

Association for Children with Russell-Silver Syndrome 22 Hoyt St., Madison, NJ 07940 (201) 377-4531, (201) 822-2715 (FAX)

Scoliosis

National Scoliosis Foundation 72 Mount Auburn St. Watertown, MA 02172 (617) 926-0397), 617) 926-0398 (FAX)

Seizure Disorder

THRESHOLD--Intractable Seizure Disorder Support Group 26 Stavola Road Middletown, NJ 07748-3728 (908) 957-0714

Short Stature

Little People of America, Inc. P.O. Box 9897 Washington, DC 20016 800) 24D-WARF

Sickle Cell Disease

National Association for Sickle Cell Disease (NASCD) 3345 Wilshire Blvd., Suite 1106 Los Angeles, CA 90010-1880 (800) 421-8453, (213) 736-5455 (213) 736-5211 (FAX)

Skin (Dermatological) Disorders

National Alopecia Areata Foundation 710 C Street, Suite 11 San Rafael, CA 94904 (415) 456-4644, (415) 456-4274 (FAX)

Dystrophic Epidermolysis Bullosa Research Association (D.E.B.R.A.) 141 Fifth Ave., Ste. 7-S New York, NY 10010 (212) 995-2220

Foundation for Ichthyosis and Related Skin Types (F.I.R.S.T.) P.O. Box 20921 Raleigh, NC 27619-0921 (800) 545-3286, (919) 782-5728 (919) 781-0679 (FAX)

Scleroderma Federation Peabody Office Building One Newbury St. Peabody, MA 01960 (508) 535-6600, (508) 535-6696 (FAX)

United Scleroderma Foundation P. O. Box 399 Watsonville, CA 95077-0399 (800) 722-HOPE (408) 728-2202, (08) 728-3328 (FAX)

National Vitiligo Foundation P.O. Box 6337 Tyler, TX 75711 (903) 534-2925, (903) 534-8075 (FAX)

Xeroderma Pigmentosum Registry (UMDNJ) New Jersey Medical School Dept. of Pathology, Room C-520 Medical Science Building 185 S. Orange Ave. Newark, NJ 07103-2714 (201) 982-6255

Sotos Syndrome

Sotos Syndrome U.S.A. Support Association (SSSA) 937 Shandra Drive Ballwin, MO 63021 (314) 256-0156

Spina Bifida

Spina Bifida Association of America 4590 MacArthur Blvd. NW #250 Washington, DC 20007-4226 (800) 621-3141 (202) 944-3285, (202) 944-3295 (FAX)

Spina Bifida Association of Canada 220-388 Donald Street Winnipeg, MB Canada R3B 2J4 (204) 957-1794

Spinal Cord Injuries

National Spinal Cord Injury Assoc. 600 W. Cummings Pk., Suite 2000 Woburn, MA 01801 (617) 935-2722 (800) 962-9629 (hotline only) (617) 932-8369 (FAX)

American Paralysis Spinal Cord Hotline 2201 Argonne Drive Baltimore, MD 21218 (800) 526-3456

American Paralysis Association 500 Morris Avenue Springfield, NJ 07081 (800) 225-0292, (201) 379-2690 (in NJ) (201) 912-9433 (FAX)

Spinal Muscular Atrophy

Families of S.M.A. P.O. Box 1465 Highland Park, IL 60035-7465 (800) 886-1762 (708) 432-5551 (phone/FAX)

Sturge-Weber Syndrome

Sturge-Weber Foundation P.O. Box 460931 Aurora, CO 80046 (800) 627-5482, (303) 360-7290 (303) 699-1406 (FAX)

Stuttering

National Center for Stuttering 200 East 33rd St. New York, NY 10016 (800) 221-2483

National Stuttering Project 2151 Irving St., Suite 208 San Francisco, CA 94122-1609 (800) 364-1677, (415) 566-5324

Stuttering Foundation of America P.O. Box 11749 Memphis, TN 38111-0749 (800) 992-9392, (202) 363-3199 (901) 452-3931 (FAX)

Sudden Infant Death Syndrome (SIDS)

National Sudden Infant Death Syndrome (SIDS) Alliance, Inc. 10500 Little Patuxent Pkwy., #420 Columbia, MD 21044-3505 (800) 221-SIDS, (410) 964-8000

Tay-Sachs Disease

National Tay-Sachs and Allied Diseases Association 2001 Beacon St., Suite 204 Brookline, MA 02146 (617) 277-4463, (617) 277-0134 (FAX)

Technology-Department

Sick Kids Need Involved People (SKIP) 216 Newport Drive Severna Park, MD 21146 (410) 379-0999

Terminal Illness

Children's Hospice International 901 N. Washington Street, Suite 700 Alexandria, VA 22314 (800) 242-4453, (703) 684-0330

Thrombocytopenia Absent Radius Syndrome

Thrombocytopenia Absent Radius Syndrome Association (TARSA) 212 Sherwood Drive, RD 1 Linwood, NJ 08221-9745 (609) 927-0418

Tourette Syndrome

Tourette Syndrome Association 42-40 Bell Blvd. Bayside, NY 11361-2861 (800) 237-0717, (718) 224-2999 (718) 279-9896 (FAX)

Treacher Collins Disease

Treacher Collins Foundation P.O. Box 683 Norwich, VT 05055 (802) 649-3020

Tuberous Sclerosis

National Tuberous Sclerosis Assoc. 8000 Corporate Drive Suite 120 Landover, MD 20785 (800) 225-NTSA, (301) 459-9888 (301) 459-0394 (FAX)

Turner's Syndrome

The Turner's Syndrome Society 7777 Keele St., Floor 2 Concord, ON Canada L4K 1Y7 (416) 660-776, (416) 660-7450 (FAX)

Urea Cycle Disorders

National Urea Cycle Disorders Found. 4559 Vauxhall Road Richmond, VA 23234 (908) 851-2731

Vestibular Disorders

Vestibulor Disorders Associations P.O. Box 4467 Portland, OR 97208-4467 (503) 229-7705

Visual Impairments

Retinitis Pigmentosa International Society for Degenerative Eye Diseases P.O. Box 900 Woodland Hills, CA 91365 (800) 344-4877, (818) 992-0500

RP Foundation Fighting Blindness 1401 Mt. Royal Ave., 4th Floor Baltimore, MD 21217 (808) 683-5555, (410) 225-9400 (410) 225-9409 (TTD) (410) 225-3936 (FAX)

National Retionblastoma Parent Group 603 Fourth Range Road Pembroke, NH 03275 (603) 224-4085

Stargardt Disease Self-Help Network P.O. Box 136 West Chicago, IL 60186 (708) 208-5017

American Council of the Blind 1155 15th St. NW, Suite 720 Washington, DC 20005 (800) 424-8666, (202) 467-5081

American Foundation for the Blind 15 W. 16th St. New York, NY 10011 (800) AFB-LINE (212) 620-2147 (in NY only)

Blind Children's Center 4120 Marathon St. Los Angeles, CA 90029-0159 (800) 222-3566

Blind Children's Fund 8500 W. Capitol Drive Milwaukee, WI 53222 (414) 464-3000 (414) 646-5693 (FAX)

Canadian National Institute for the Blind 1929 Bayview Ave. Toronto, ON Canada M4G 3E8 (416) 480-7415, (416) 480-7414 (416) 480-7699 (FAX)

National Association for Parents of the Visually Impaired P.O. Box 317 Watertown, MA 02272-0317 (800) 562-6265

National Association for Visually Handicapped 22 West 21st Street, 6th Floor New York, NY 10010 (212) 889-3141, (202) 727-2931 (FAX)

National Federation of the Blind 1800 Johnson St. Baltimore, MD 21230 (410) 659-9314, (410) 752-5011 (BBS)

Vision Foundation 818 Mt. Auburn St. Watertown, MA. 02172 (800) 852-3029 (in MA), (617) 926-4232

Institute for Families of Blind Children P.O. Box 54700, Mail Stop #111 Los Angeles, CA 90054 (213) 669-4649

National Society to Prevent Blindness 500 E. Remington Rd. Schaumburg, IL 60173-4557 (800) 331-2020, (708) 843-2020 (708) 843-8458 (FAX)

Recording for the Blind 20 Roszel Rd., Princeton, NJ 08540 (609) 452-0606

American Printing House for the Blind 1839 Frankfort Ave. P.O. Box 6085 Louisville, KY 40206-0085 (800) 223-1839 (502) 895-2405, (502) 895-1509 (FAX)

Von Hippel-Lindau Syndrome

VHL (Von Hippel-Lindau Syndrome) Family Alliance 171 Clinton Rd. Brookline, MA 02146 (617) 232-5946 (evenings) (617) 734-8233 (FAX)

Wegener Granulomatosis

Wegener Granulomatosis Support Group, Inc. P.O. Box 1518 Platt City, MO 64079-1518 (816) 431_2096, (800) 277-9474

Williams Syndrome

Williams Syndrome Association P.O. Box 3297 Ballwin, MO 63022-3297 (314) 227-4411

Wilson's Disease

Wilson's Disease Association P.O. Box 75324 Washington, DC 20013 (703) 636-3003, (703) 636-3014

Wolf-Hirshhorn Syndrome (4p-)

4p- Parents Group 3200 Rivanna Court Woodbridge, VA 22192 (703) 491-0309

Wolf-Hirshhorn Syndrome (4p-) Support Group and Newsletter 5536 Virginia Ct. Amherst, OH 44001 (216) 282-1460
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Publication:The Exceptional Parent
Article Type:Directory
Date:Sep 1, 1993
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