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 [phone] [phone] (FAX)

Canadian Association for Community Living Kinsmen Building York University 4700 Keele Street North York, ON Canada M3J 1P3 [phone] [phone] (FAX)

Children's Defense Fund 25 E Street NW Washington, DC 20001 [phone] [phone] (FAX)

Christian Council on Persons with Disabilities 1324 Yosemite Blvd. Modesto, CA 95354 [phone]

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 [phone] [phone] (FAX)

Council on Family Health 225 Park Avenue S 17th Floor New York, NY 10003 [phone]

Keshet-Jewish Parents of Children with Special Needs 3525 W. Peterson, Suite T-17 Chicago, IL 60659 [phone]

Learning How, Inc. P.O. Box 35481 Charlotte, NC 28235-5481 [phone] [phone] (FAX)

MUMS (Mothers United for Moral Support, Inc.)) c/o Julie Gordon 150 Cluster Street Green Bay, WI 54301 [phone]

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

National Catholic Office for Persons with Disabilities P.O. Box 29113 Washington, DC 20017 [phone] (Voice/TDD) [phone]

National Center for Youth with Disabilities University of Minnesota 420 Delaware Street SE Box 721 Minneapolis, MN 55455-0392 [phone] [phone] [phone] (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 [phone] [phone] (TDD) [phone]

NICHCY (National Information Center for Children and Youth with Disabilities) P.O. Box 1492 Washington, DC 20013 [phone] [phone] [phone] (TDD) [phone] (FAX)

National Information System and Clearinghouse Center for Developmental Disabilities University of South Carolina Benson Building Columbia, SC 29208 [phone] [phone] (in SC) [phone] (FAX)

National Organization on Disability 910 16th Street NW, Suite 600 Washington, DC 20006 [phone] [phone] (in MD) (800) 248-ABLE

NPND

(National Parent Network on Disabilities) 1600 Prince Street, Suite 115 Alexandria, VA 22314 (703) 684-NPND [phone] (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 [phone] [phone] (FAX)

STOMP (Specialized Training of Military Persons) c/o Washington PAVE 12208 Pacific Highway SW Tamco, WA 98499 [phone]

Accessible Housing

Center for Accessible Housing North Carolina State University/School of Design Box 8613 Raleigh, NC 27695-8613 [phone] [phone] (FAX)

Office of Fair Housing and Equal Opportunity 820 First Street NW Washington, DC 20002 [phone] [phone] (in DC)

Adoption

AASK (Adopt a Special Kid) 3530 Grand Avenue Oakland, CA 94610 [phone]

Adoptive Families of America 3333 Highway 100N Minneapolis, MN 55422 [phone]

Children's Adoption Support Services 1039 Evarts Street NE Washington, DC 20017 [phone]

National Adoption Center 1500 Walnut Street, Suite 701 Philadelphia, PA 19102 [phone] (800) TOA-DOPT [phone] (FAX)

National Adoption Information 11426 Rockville Pike, Suite 410 ROckville, MD 20852 [phone]

Career Counseling

ERIC Clearinghouse on Disabilities and Gifted Education 1920 Association Drive Reston, VA 22091-1589 [phone] [phone] (FAX)

JAN (Job Accommodation Network) West Virginia University 1918 Chestnut Ridge Road, Suite 1 Morgantown, WV 26506-6080 [phone] [phone] (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 [phone] [phone]

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

Partnership for Training and Employment Careers 1620 I Street NW Washington, DC 20006 [phone]

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 [phone] [phone] (FAX)

Education

AHEAD

(Association on Higher Education and Disability) P.O. Box 21192 Columbus, OH 43221 [phone] (Voice/TDD)

National Committee for Citizens in Education 900 Second Street NE, Ste. 8 Washington, DC 20002 [phone] (800) NET-WORK

National Information Center for Educational Media 4314 Mesa Grande SE Albuquerque, NM 87108 [phone]

Legal Assistance

American Bar Association Center on Children and the Law 1800 M Street NW Suite 200 South Washington, DC 20036 [phone]

DREDF (Disability Rights Education and Defense Fund) 2212 Sixth Street Berkeley, CA 94710 [phone]

The Bazelow Center 1101 15th Street NW Suite 1212 Washington, DC 20005 [phone] [phone] (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 [phone] [phone] (FAX)

Newborns with Illness

Parent Care 9041 Colgate Street Indianapolis, IN 46268 [phone]

Rare Disorders

Lethbridge Society for Rare Disorders #100B, 515-7 Street S Lethbridge, AB Canada T1J 2G8 [phone]

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

Rehabilitation

Canadian Rehabilitation Council for the Disabled 45 Sheppard Avenue E, Suite 801 Willowdale, ON Canada M2N 5W9 [phone] [phone] (FAX)

Kinsman Rehabilitation Foundation of British Columbia 2256 West 12th Avenue Vancouver, BC, Canada V6K 2N5 [phone] [phone] (TDD)

National Rehabilitation Information Center 8455 Colesville Road Silver Spring, MD 20910 [phone] [phone] (Voice/TDD)

World Rehabilitation Fund 386 Park Avenue S Suite 500 New York, NY 10016-4901 [phone]

Self-Help

American Self-Help Clearinghouse St. Clares-Riverside Medical Center Denville, NJ 07834 [phone] [phone] (TDD)

National Self-Help Clearinghouse Grad. School/University Center CUNY 25 West 43rd Street, Room 620 New York, NY 10036 [phone]

Sibling Support

Siblings for Significant Change United Charities Building 105 E. 22nd Street, Room 710 New York, NY 10010 [phone]

Siblings Information Network The A.J. Pappanikou Center on Special Education and Rehabilitation: A University Affiliated Program) 1776 Ellington Road South Windsor, CT 06074 [phone] [phone] (FAX)

Travel and Exchange

Mobility International P.O. Box 3551 Eugene, OR 97403 [phone] (Voice/TDD)

Travelin' Talk P.O. Box 3534 Clarksville, TN 37043-3534 [phone]

Hotlines

DIRECT LINK for the disABLED, Inc. P.O. Box 1036 Solvang, CA 93464 [phone] (Voice/TT)

National Digestive Diseases Information Clearinghouse 9000 Rockville Pike Box NDDIC Bethesda, MD 20892 [phone] [phone] (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 [phone]

Social Security Administration Hotline [phone] [phone] (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 [phone], [phone] (FAX)

Agenesis of the Corpus Callosum 

ACC Network 86 N. Main St. Orono, ME 04473 [phone]

Aicardi Syndrome

Aicardi Syndrome Awareness and Support Group 29 Delavan Ave. Toronto, Ontario, Canada, M5P 1T2 [phone]

Aicardi Syndrome Newsletter, Inc. 5115 Troy Urbana Rd. Casstown, OH 45312 [phone] (phone/FAX)

Albinism and Hypopigmentation 

National Organization for Albinism and Hypopigmentation (NOAH) 1500 Locust St., Suite 1816 Philadelphia, PA 19102 [phone], [phone]

Amputation 

National Amputation Foundation 73 Church St. Malverne, NY 11565 [phone], [phone]

Amylotrophic Lateral Sclerosis (Lou Gehrig's Disease)

Amyotrophic Lateral Sclerosis Association 21021 Ventura Blvd., Suite 321 Woodland Hills, CA 91364 [phone]

Angelman Syndrome

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

Anorectal Malformations

Pull-thru Network 1 Circle Rd. Darien, CT 06820 [phone]

Aphasia (inability to form words)

National Aphasia Association Young People's Network P.O. Box 1887 Murray Hill Station New York, NY 10156-0611 [phone]

Arnold-Chiari Syndrome

Arnold-Chiari Family Network 67 Spring Street Weymouth, MA 02188 [phone]

Arthritis

American Juvenile Arthritis Organization 1314 Spring St. NW Atlanta, GA 30309 [phone], [phone] (FAX)

Arthrogryposis 

Avenues National Support Group for Arthrogryposis Multiplex Congenita P.O. Box 5192 Sonora, CA 95370 [phone]

Asthma and Allergy

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

Ataxia (loss of coordinated movement)

National Ataxia Foundation 750 Twelve Oaks Center 15500 Wayzata Blvd. Wayzata, MN 55391 [phone], [phone] (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 [phone]

Children with Attention Deficit Disorders (C.H.A.D.D.) 499 N.W. 70th Ave., Suite 308 Plantation, FL 33317 [phone], [phone] (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, [phone] [phone] (FAX)

National Autism Hotline/Autism Services Center 605 Ninth St. Prichard Building P.O. Box 507 Huntington, WV 25710-0507 [phone], [phone] (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 [phone]

Beckwith-Wiedemann Syndrome

Beckwith-Wiedemann Support Network 3206 Braeburn Circle Ann Arbor, MI 48108 [phone], [phone] (FAX)

Birth Defects

Association of Birth Defect Children Orlando Executive Park 5400 Diplomat Circle, Suite 270 Orlando, FL 32810 [phone] (phone/FAX)

March of Dimes Birth Defects Foundation 1275 Mamaroneck Ave. White Plains, NY 10605 [phone], [phone] (FAX)

National Birth Defects Center 30 Warren Street Boston, MA 02135 [phone], [phone] (FAX)

National Network to Prevent Birth Defects Box 15309 SE Station Washington, DC 20003 [phone]

Brain Damage

Andrew Blake Foundation Box 67A9, Row 1 Winona, MN 55987 [phone]

Brain Diseases and Disorders (general)

Children's Brain Diseases Foundation 350 Parnassus Ave., Suite 900 San Francisco, CA 94117 [phone], [phone] (FAX)

Fighters for Encephaly Defects Support (FEDS) 3032 Brereton St.. Pittsburgh, PA 15219 [phone]

Brain Tumor

American Brain Tumor Association 720 River Rd., Suite 146 Des Plaines, IL 60018 [phone] [phone] (patient line) [phone] (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 [phone]

Candlelighters Childhood Cancer Foundation 7910 Woodmont Ave., Suite 460 Bethesda, MD 20814 [phone], [phone] (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 [phone]

G.I. Polyposis and Hereditary Colon Cancer Registry Ctr for Medical Genetics, Johns Hopkins Hospital. 600 N. Wolfe St. Baltimore, MD 21287-4922 [phone]

Intestinal Multiple Polyposis and Colorectal Cancer (IMPACC) 1008-101 Brinker Drive Hagerstown, MD 21740 [phone]

Corporate Angel Network (CAN) Westchester County Airport Building 1 White Plains, NY 10604 [phone], [phone] (FAX)

Cardio-Facio-Cutaneous Syndrome

CFC Support Network 157 Alder Ave. McKee City, NJ 08232 [phone]

Cerebral Palsy

United Cerebral Palsy Association 1522 K Street NW, #1112 Washington, D.C. 20005 [phone], [phone] [phone] (FAX)

Charcot-Marie-Tooth Disease

Charcot-Marie-Tooth (CMT) International 1 Springbank Drive St. Catharines, ON, Canada L2S 2K1 [phone]

Charcot-Marie-Tooth Association Crozer Mills Enterprise Center 601 Upland Ave., Upland, PA 19015 [phone], [phone] (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 [phone]

Children who have Died

Compassionate Friends P.O. Box 3696 Oak Brook, IL 60522-3696 [phone], [phone] (FAX)

A.M.E.N.D. (Aiding Mothers & Fathers Experiencing Neonatal Death) 4324 Berrywick Terrace St. Louis, MO 63128 [phone]

Chromosome 9p-

Support Group for 9p- 675 N. Round Table Drive Las Vegas, NV 89110 [phone]

Support Group for Monosomy 9p 43304 Kipton Nickle Plate Road La Grange, OH 44050 [phone]

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

Chromosomes 18 and 13

Chromosome 18 Registry & Research Society 6302 Fox Head San Antonio, TX 78247 [phone] (phone/FAX)

Support Organization for Trisomy 18, 13 and Related Disorders 2982 S. Union St. Rochester, NY 14624 [phone]

Chromosome Deletion

Chromosome Deletion Outreach P.O. Box 532 Center Moriches, NY 11934 [phone]

Chronic Dizziness and Balance Disorders

Pen Pal Support Group for Chronic Dizziness & Balance Disorders Box 305 Elliot, IA 51532 [phone]

Chronic Illness

Parents of Chronically Ill Children 1527 Maryland St. Springfield, IL 62702 [phone]

Families of Children Under Stress (FOCUS) P.O. Box 1058 Conyers, GA 30207 [phone]

Cleft Palate

Cleft Palate Foundation 1218 Grandview Ave Pittsburgh, PA 15211 (800) 24-CLEFT, [phone] [phone] (FAX)

Prescription Parents, Inc. P.O. Box 161 W. Roxbury, MA 02132 [phone]

Cockayne Syndrome

Share and Care 1294 S Street North Valley Stream, NY 11580 [phone]

Coffin-Lowry Syndrome

Coffin-Lowry Syndrome Foundation 6790 N.E. Day Road W Bainbridge Island, WA 98110 [phone]

Cooley's Anemia

Cooley's Anemia Foundation 105 East 22nd Street, Suite 911 New York, NY 10010 [phone], [phone] (FAX)

Cornelia de Lange Syndrome 

Cornelia de Lange Syndrome Foundation 60 Dyer Avenue Collinsville, CT 06022-1201 [phone], (800) 753-CDLS [phone], [phone] (FAX)

Craniofacial Disorders

AboutFace U.S.A. 1002 Liberty Ln. Warrington, PA 18976 (800) 225-FACE [phone] (FAX)

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

FACE of Sarasota, Inc. Bernice Brooks Bergen, exec. dir. P.O. Box 1424 Sarasota, FL 34230 [phone] [phone] (FAX)

Children's Craniofacial Association 10210 N. Central Expressway Suite 230, LB37 Dallas, TX 75231 [phone], [phone] [phone] (FAX)

Let's Face It P.O. Box 711 Concord, MA 01742 [phone]

FACES--National Association for the Craniofacially Handicapped P.O. Box 11082 Chattanooga, TN 37401 [phone], [phone] (FAX)

National Foundation for Facial Reconstruction 317 East 34th Street, 9th Floor New York, NY 10016 (800) 422-FACE, [phone] [phone] (FAX)

Hemifacial Microsomia/Goldenhar Syndrome Family Support Network 84 Gleniffer Hill Rd. Richboro, PA 18954 [phone]

Cri Du Chat (Cat Cry) Syndrome

The 5p- Society 11609 Oakmont Overland Park, KS 66210 [phone]

Crohn's Disease and Ulcerative Colitis

Crohn's & Colitis Foundation of America 444 Park Ave. S, 11th Floor New York, NY 10018 [phone], [phone] (FAX)

Cushing Syndrome

National Cushing Syndrome Association 4645 Van Nuys Blvd., Suite 104 Sherman Oaks, CA 91403 [phone], [phone] (FAX)

Cyclic Vomiting Syndrome 

Cyclic Vomiting Syndrome Association 13180 Caroline Court Elm Grove, WI 53122 [phone], [phone] (FAX)

Cystic Fibrosis

Cystic Fibrosis Foundation 6931 Arlington, Rd. Bethesda, MD 20814 (800) FIG-HTCF, [phone], [phone] (FAX)

Cystinosis

Cystinosis foundation 1212 Broadway, Suite 830 Oakland, CA 94612 [phone]

Cytochrome C Oxidase Deficiency

Cytochrome C Oxidase Deficiency

Parental Research and Support Foundation 106 Major St. Aliquippa, PA 15001 [phone]

Diabetes

American Diabetes Association National Service Center 1660 Duke St. Alexandria, VA 22314 [phone], [phone] [phone] (FAX)

Canadian Diabetes Association 15 Toronto St., Suite 1001 Toronto, ON Canada M5C 2E3 [phone], [phone] (FAX)

Juvenile Diabetes Foundation International 432 Park Ave. S, 16th Floor New York, NY 10016 [phone], [phone] [phone] (FAX)

DiGeorge Syndrome

Information and Support for DiGeorge Syndrome Families 4075-B Miramar St. La Jolla, CA 92037 [phone]

Down Syndrome

Association for Children with Down Syndrome 2616 Martin Ave. Bellmore, NY 11710 [phone], [phone] (FAX)

Canadian Down Syndrome Society 12837 76th Ave., Suite 206 Surrey, BC, Canada V3W 2V3 [phone], [phone] (FAX)

Caring Inc. P.O. Box 400 Milton, WA 98354 [phone]

National Down Syndrome Congress 1605 Chantilly Drive, Suite 250 Atlanta, GA 30324 [phone], [phone] [phone] (FAX)

National Down Syndrome Society 666 Broadway, Suite 810 New York, NY 10012 [phone], [phone] [phone] (FAX)

Dysautonomia Foundation

Dysautonomia Foundation 20 E. 46th Street, Rm. 302 New York, NY 10017 [phone], [phone] (FAX)

Dyslexia

Dyslexia Research Institute, Inc. 4745 Centerville Road Tallahasse, FL 32308 [phone], [phone] (FAX)

The Orton Dyslexia Society 8600 La Salle Rd. Chester Bldg., Suite 382 Baltimore, MD 21286-2044 [phone], [phone] [phone] (FAX)

Dystonia 

Dystonia Medical Research Foundation 1177 W. Hastings St., Suite 2000 Vancouver, BC Canada VCZ 2KE [phone]

Dystonia Medical Research Foundation One East Wacker Drive, Suite 2900 Chicago, IL 60601-2001 [phone], [phone] (FAX)

Ectodermal Dysplasia

National Foundation for Ectodermal Dysplasia 219 E. Main P.O. Box 114 Mascoutah, IL 62258-0114 [phone], [phone] (FAX)

Ehlers-Danlos Syndrome

Ehlers-Danlos National Foundation P.O. Box 1212 Southgate, MI 48195 [phone], [phone] (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, [phone] [phone] (FAX)

Evans Syndrome

Evans Syndrome Support and Research Group 5630 Devon St. Port Orange, FL 32127 [phone], [phone] (FAX)

Extracorporeal Membrane Oxygenation 

ECMO Moms and Dads International Parent Support P.O. BOx 53848 Lubbock, TX 79453 [phone], [phone]

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 [phone], [phone] (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 [phone], [phone] [phone] (FAX)

Freeman-Sheldon Syndrome

Freeman-Sheldon Parent Support Group 509 E. Northmont Way Salt Lake City, UT 84103 [phone]

Galactosemia 

Parents of Galactosemic Children 20981 Solano Way Boca Raton, FL 33433 [phone]

Gaucher Disease

National Gaucher Foundation 19241 Montgomery Village Ave., E-21 Gaithersburg, MD 20879 [phone], [phone] (FAX)

Genetic Conditions (general)

Alliance of Genetic Support Groups 35 Wisconsin Cr. #440 Chevy Chase, MD 20815-7015 (800) 336-GENE, [phone] [phone] (FAX)

National Foundation for Jewish Genetic Diseases 250 Park Avenue, Suite 1000 New York, NY 10017 [phone]

Hereditary Disease Foundation 1427 7th Street, Suite 2 Santa Monica, CA 90401 [phone], [phone] (FAX)

Glycogen Storage Disease 

Association for Glycogen Storage Disease P.O. Box 896 Durant, IA 52747 [phone] (phone/FAX)

Group B Strep

Group B Strep Association P.O. Box 16515 Chapel Hill, NC 27516 [phone]

Growth Disorders (general)

Human Growth Foundation 7777 Leesburg Pike Falls Church, VA 22043 [phone], [phone] [phone] (FAX)

Guillain-Barre Syndrome

Guillain-Barre Syndrome Foundation International P.O. Box 262 Wynnewood, PA 19096 [phone], [phone] (FAX)

Hallerman-Streiff Syndrome

Hallerman-Streiff Support Group 1367 Beulah Park Drive Lexington, KY 40517 [phone]

Head Injuries

National Head Injury Foundation 1776 Massachusetts Avenue, NW, Suite 100 Washington, DC 20036-1904 [phone] [phone] (helpline) [phone] (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) [phone] (voice/TDD) [phone] (FAX)

Alexander Graham Bell Association for the Deaf 3417 Volta Place NW Washington, DC 20007-2778 [phone] (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 [phone], [phone] (TDD) [phone] (FAX)

Better Hearing Institute P.O. Box 1840 Washington, DC 20013 (800) EAR-WELL (voice/TDD) [phone] (FAX)

Canadian Hearing Society 271 Spadina Road Toronto, ON Canada M5R 2V3 [phone], [phone] (TDD) [phone] (FAX)

International Organization for the Education of the Hearing-Imparied 3417 Volta Place NW Washington, DC 20007 [phone] (Voice/TDD_

John Tracy Clinic 806 W. Adams Blvd. Los Angeles, CA 90007 [phone] (voice/TDD) [phone], [phone] (TTY) [phone] (FAX)

LISTEN, Inc. P.O. Box 27213 Temple, AZ 85285 [phone]

National Association for the Deaf (NAD) 814 Thayer Ave. Silver Spring, MD 20910-4500 [phone], [phone] (TDD) [phone] (FAX)

National Cued Speech Association P.O. Box 31345 Raleigh, NC 27622 [phone] (voice/TDD) [phone] (FAX)

International Hearing Society 20361 Middlebelt Rd. Livonia, MI 48152 [phone], [phone] [phone] (FAX)

National Information Center onm Deafness Gallaudet University 800 Florida Ave. NE Washington, DC 20002-3695 [phone], [phone] (TDD) [phone] (FAX)

National Technical Institute for the Deaf Rochester Institute of Technology Lyndon Baines Johnson Building 52 Lomb Memorial Drive Rochester, NY 14623-5604 [phone], [phone] (FAX)

Self Help for Hard of Hearing People, Inc. (SHHH) 7800 Wisconsin Ave. Bethesda, MD 20814 [phone], [phone] (TDD) [phone] (FAX)

Signing Exact English (SEE) Center for the Advancement of Deaf Children P.O. Box 1181 Los Alamitos, CA 90720 [phone], [phone] (FAX)

TRIPOD GRAPEVINE 2901 N. Keystone St. Burbank, CA 91504 [phone] (voice/TDD) [phone] (FAX)

VOICE for Hearing-Impaired Children 124 Eglinton Avenue W, Suite 420 Toronto, ON Canada M4R 2G8 [phone], [phone] (FAX)

Deafpride, Inc. 1350 Potomac Ave. SE Washington, DC 20003 [phone] (voice/TDD) [phone] (FAX)

Captioned Films & Videos for the Dea Modern Talking Picture Services 5000 Park Street N St. Petersburg, FL 33709 [phone], [phone] [phone] (FAX)

Deaf-REACH 3521 12th Street NE Washington, DC 20017 [phone], [phone] (FAX)

Heart Disorders

American Heart Association 7272 Greenville Ave. Dallas, TX 75231-4596 [phone], [phone] (FAX)

Heart, Lung and Blood Disorders

National Heart, Lung and Blood Institute P.O. 30105 Bethesda, MD 20824-0105 [phone]

Hemochromatosis 

Hemochromatosis Foundation P.O. Box 8569 Albany, NY 12208 [phone]

Hemophilia

Canadian Hemophilia Society 1450 City Councillors, Ste. 840 Montreal, PQ Canada H3A 2E6 [phone], [phone] (FAX)

National Hemophilia Foundation (NHF) 110 Greene St., Rm. 303 New York, NY 10012 [phone], [phone] (FAX)

Histioclytosis

Histiocytosis Association of America 609 New York Rd. Glassboro, NJ 08028 [phone], [phone] [phone] (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 [phone], [phone] (FAX)

Hydrocephalus Association 870 Market Street, Suite 955 San Francisco, CA 94102 [phone]

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 [phone]

Guardians of Hydrocephalus Research Foundation 2618 Avenue Z Brooklyn, NY 11235 [phone], [phone] [phone] (FAX)

Immune Deficiency

Immune Deficiency Foundation (IDF) P.O. Box 586 Columnbia, MD 21045 [phone]

Incontinence

Help for Incontinent People P.O. Box 544 Union, SC 29379 [phone], [phone] (FAX)

Simon Foundation for Continence P.O. Box 815 Wilmette, IL 60091 (800) 23-SIMON [phone] (FAX)

Intestinal Pseudo- Obstruction

American Pseudo-Obstruction and Hirschsprung Disease Society, Inc. P.O. Box 772 Medford, MA 02155 [phone], [phone] (FAX)

Intraventricular Hemorrhage

I.V.H. Parents P.O. Box 56-1111 Miami, FL 33256-1111 [phone], [phone] (FAX)

Joubert Syndrome

Joubert Syndrome Parents-In-Touch Network 12348 Summer Meadow Road Rock, MI 49880 [phone]

Kidney Disorders

Polycystic Kidney Research Foundation (PKR) 922 Walnut ST., Suite 411 Kansas City, MO 64106 (800) PKD-CURE [phone], [phone] (FAX)

American Kidney Fund 6110 Executive Blvd., Suite 1010 Rockville, MD 20852 [phone] [phone] (FAX)

National Kidney Foundation 30 East 33rd Street, 11th Floor New York, NY 10016 [phone], [phone]

Klippel-Trenaunay Support Group 4610 Wooddale Ave. Edina, MN 55454 [phone]

Lactic-Acidosis

Lactic-Acidosis Support Group P.O. Box 480282 Denver, CO 80248-0282 [phone]

Landau-Kleffner Syndrome

C.A.N.D.L.E. Support Group 4414 McCampbell Drive Montgomery, AL 36106 [phone]) (phone/FAX)

Laurence-Moon-Bardet-Biedl Syndrome

Laurence-Moon-Bardet-Biedl Syndrome Network 18 Strawberry Hill Windsor, CT 06095 [phone]

Learning Disabilities

Learning Disabilities Association of America 4156 Library Rd. Pittsburgh, PA 15234 [phone], 341-8077 [phone] (FAX)

Learning Disabilities Association of Canada 323 Chapel St., Suite 200 Ottawa, ON Canada K1N 7Z2 [phone], [phone] (FAX)

National Center for Learning Disabilities 381 Park Ave. S, Suite 1420 New York,NY 10016 [phone] [phone] (FAX)

Leigh's Disease

National Leigh's Disease Foundation 613 Childs Street P.O. Box 2222 Corinths, MS 38834 [phone], [phone] (FAX)

Leprosy

American Leprosy Missions 1 ALM Way Greenville, SC 29601 [phone], [phone] [phone] (FAX)

Leukemia

Leukemia Society of America 600 Third Ave., 4th Floor New York, NY 10016 [phone], [phone] (FAX)

Leukodlystrophy

United Leukodystrophy Foundation 2304 Highland Drive Sycamore, IL 60178 [phone], [phone] [phone] (FAX)

Lissencephaly, Pachygyria and Agyria

Lissencephaly Network 716 Autumn Ridge Lane Fort Wayne, IN 46804 [phone]

Liver Disorders

American Liver Foundation 1425 Pompton Ave. Cedar Grove, NJ 07009 [phone], [phone]

Lowe Syndrome

Lowe Syndrome Association 222 Lincoln St. West Lafayett, IN 47906 [phone]

Lung Disease

American Lung Association 1740 Broadway New York, NY, 10019 [phone], [phone] (FAX)

Lupus Erythematosis

The American Lupus Society 3914 Del Amop Blvd., Suite 922 Torrance, CA 90503 [phone] (Info line)s [phone]

Lupus Foundation of America, Inc. 4 Researchd Place, Suite 180 Rockville, MD 20850-3226 [phone], [phone] [phone] (Spanish) [phone] (FAX)

Lynne Disease

Lynne Disease Foundation 1 Financial Plaza Gold Building, 18th Floor Hartford, CT 06103 [phone], [phone] (FAX)

Macular Diseases

Association for Macular Diseases, Inc. 210 East 64th St. New York, NY 10021 [phone]

Malignant Hyperthemia

Malignant Hyperthemia Association of United States (MHAUS) P.O. Box 191 Westporo, CT 06881-0191 [phone], [phone] (FAX)

Maple Syrup Urine Disease 

Maple Syrup Urine Disease Family Support Group 8017 Jonestown Rd. Harrisburg, PA 17112-9715 [phone]

Marfan Syndrome

National Marfan Foundation 382 Main Street Port Washington, NY 11050 (800) 8-MARFAN [phone] (PHONE/FAX)

Medium-Chain Acyhl-CoA Dehydrogenase Deficiency

Support Group for Medium-Chain Acyl-CoA Dehydrogenase Deficiency (MCAD) 805 Montrose Drive Greensboro, NC 27410 [phone]

Mental Illness

Academy of Clinicald Mental Health Counselors 5999 Stevenson Ave. Alexandria, VA 22304 [phone], ext. 384 [phone] (FAX)

Federation of Families for Children's Mental Health 1021 Prince St. Alexandria, VA 22314-2971 [phone], [phone] [phone] (FAX)

National Mental Health Association 1021 Prine St. Alexandria, VA 22314-2971 [phone]. [phone] [phone] 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 [phone] (TDD) [phone] (FAX)

Canadian Association for Community Living 4700 Keele St. Kinsman Building North York, ON Canada 437 7P3 [phone], [phone] (FAX)

Mental Retardation/Mental Illness

National Organization of the Dually Diagnwsed (NADD) 110 Prince Street Kingston, NY 12401 [phone], [phone]

Moebius Syndrome

Moebius Syndrome Support Group 39521 Rowen Court Palmdale, CA 93551 [phone]

Mucopolysaccharidosis

National Mucopolysaccharidosis Society 17 Kraemer St. Hicksville, NY 11801 [phone] [phone] (FAX)

Zain Hansen M.P.S. Foundation P.O. Box 4768 Arcata, CA 95521 [phone], [phone]

Multiple Sclerosis

National Multiple Sclerosis Society 733 3rd Ave. New York, NY 10017 [phone], [phone] [phone] (FAX)

Muscular Dystrophy

Muscular Dystrophy Association 3300 E. Sunshine Drive Tuscon, AZ 85718-3208 [phone], [phone] (FAX)

Myasthenia Gravis 

Myasthenia Gravis Foundation (MGF) 53 W Jackson Blvd., Suite 660 0Chicago, IL 60604 [phone], [phone] [phone] (FAX)

Myeloproliferative Disease

MPD Research Center, Inc. 2220 Tieman Ave. Baychester, NY 10469 (800) HELP-MPD, [phone]

Myeloproliferation Disease Patient Network and Support Group M.P.D. Research Center 2220 Tieman Ave. Baychester, NY 10469 [phone], [phone] (FAX)

Mywclonus

Myoclonus Families United 1564 East 34th St. Brooklyn, NY 11234 [phone]

Nager and Miller Syndromes

Nager and Miller Sndromes Support 333 Country Lane Glenview, IL 60025 [phone]

Narcolepsy

American Narcolepsy Association 425 California St. Suite 201 San Francisco, CA 94104 [phone]

Neurofibromatosis 

National Neurofibromatosis Foundation 141 Fift Avenue, Suite 7-S New York, NY 10010-7105 [phone], [phone] [phone] (FAX)

Neurological Disorders

National Institute of Neurological Disorders and Stroke 9000 Rockville Pike, Bldg. 31, Rm. 8A-16 Bethesda, MD 20892 [phone], [phone] (FAX)

Neurometabolic Disorders

Association of Neurometabolic Disorders 5223 Brookfield Lane Sylvania, OH 43560-1809 [phone]

Newborns with Illness

Parent Care, Inc. 9041 Colgate St. Indianapolis, In 46268-1210 [phone]

Niemann-Pick Disease

National Niemann-Pick Disease Foundation, Inc. 22201 Riverpoint Trail Carrollton, VA 23314 [phone]

Noonan Syndrome

Noonan Syndrome Support Group 1278 Pine Ave. San Jose, CA 95125 [phone]

Organic Acidemia

Organic Acidemia Association, Inc. 522 Lander St. Reno, NV 89509 [phone], [phone] (FAX)

Orthopedic and Burn Problems

International Shriners Headquarters 2900 Rocky Point Drive Tampa, FL 33607 [phone] (in FL) [phone] (US) [phone] (CAN) [phone] [phone] (FAX)

Osteogenis Imperfecta

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

Ostomy

United Association 366 Executive Park, Suite 120 Irvine, CA 92714-6744 [phone] [phone], [phone] (FAX)

Oxalosis & Hyperoxaluria

Oxalosis & Hyperoxaluria Found. P.O. Box 1632 Kent, WA 98035 [phone] [phone] (#5100)

Pallister-Killian Syndrome

Pallister-Killian Family Support Group 4255 Fifth Ave. SW Naples, FL 33999 [phone]

Parkinson Disease

National Parkinson Foun< tion 1501 Ninth Ave. NW Miami, FL 3316 [phone], [phone] (in FL) [phone] (FAX)

Polymyositis & Dermatomyositis 

National Support Group for Polymyositis & Dermatomyositis

P.O. Box 890 Cooperstown, NY 13326 [phone]

Porphyria 

American Porphyria Foundation P.O. BOx 22712 Houston, TX 77227, [phone]

Prader-Willi Syndrome

Prader-Willi Syndrome Association 1821 University Ave. W, #N356 St. Paul, MN 55104 [phone], [phone] [phone] (FAX)

Proteus Syndrome

Proteus Syndrome 805 E. 121st Terr. Kansas City, MO 64146 [phone], [phone] (FAX)

Psoriasis

National Psoriasia Foundation 6600 SW 92nd, Suite 300 Portland, OR 97223 [phone]

Purine 24

Purine 24, Inc. 5424 Beech Ave. Bethesda, MD 20814 [phone]

Reflex Sympahetic Dystrophy Syndrome

Reflex Sympathetic Dystrophy Association 116 Haddonfield, NJ 08033 [phone] (phone/FAX)

Rett Syndrome

International Rett Syndrome Association 9121 Piscataway Rd., Suite 2B Clinton, MD 20735 [phone]

Rubinstein-Taybi Syndrome

Rubinstein-Taybi Parent Group P.O. Box 146 Smith Centers, KS 66967 [phone]

Russell-Silver Syndrome

Association for Children with Russell-Silver Syndrome 22 Hoyt St., Madison, NJ 07940 [phone], [phone] (FAX)

Scoliosis

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

Seizure Disorder

THRESHOLD--Intractable Seizure Disorder Support Group 26 Stavola Road Middletown, NJ 07748-3728 [phone]

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 [phone], [phone] [phone] (FAX)

Skin (Dermatological) Disorders

National Alopecia Areata Foundation 710 C Street, Suite 11 San Rafael, CA 94904 [phone], [phone] (FAX)

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

Foundation for Ichthyosis and Related Skin Types (F.I.R.S.T.) P.O. Box 20921 Raleigh, NC 27619-0921 [phone], [phone] [phone] (FAX)

Scleroderma Federation Peabody Office Building One Newbury St. Peabody, MA 01960 [phone], [phone] (FAX)

United Scleroderma Foundation P. O. Box 399 Watsonville, CA 95077-0399 (800) 722-HOPE [phone], [phone] (FAX)

National Vitiligo Foundation P.O. Box 6337 Tyler, TX 75711 [phone], [phone] (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 [phone]

Sotos Syndrome

Sotos Syndrome U.S.A. Support Association (SSSA) 937 Shandra Drive Ballwin, MO 63021 [phone]

Spina Bifida

Spina Bifida Association of America 4590 MacArthur Blvd. NW #250 Washington, DC 20007-4226 [phone] [phone], [phone] (FAX)

Spina Bifida Association of Canada 220-388 Donald Street Winnipeg, MB Canada R3B 2J4 [phone]

Spinal Cord Injuries

National Spinal Cord Injury Assoc. 600 W. Cummings Pk., Suite 2000 Woburn, MA 01801 [phone] [phone] (hotline only) [phone] (FAX)

American Paralysis Spinal Cord Hotline 2201 Argonne Drive Baltimore, MD 21218 [phone]

American Paralysis Association 500 Morris Avenue Springfield, NJ 07081 [phone], [phone] (in NJ) [phone] (FAX)

Spinal Muscular Atrophy 

Families of S.M.A. P.O. Box 1465 Highland Park, IL 60035-7465 [phone] [phone] (phone/FAX)

Sturge-Weber Syndrome

Sturge-Weber Foundation P.O. Box 460931 Aurora, CO 80046 [phone], [phone] [phone] (FAX)

Stuttering

National Center for Stuttering 200 East 33rd St. New York, NY 10016 [phone]

National Stuttering Project 2151 Irving St., Suite 208 San Francisco, CA 94122-1609 [phone], [phone]

Stuttering Foundation of America P.O. Box 11749 Memphis, TN 38111-0749 [phone], [phone] [phone] (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, [phone]

Tay-Sachs Disease

National Tay-Sachs and Allied Diseases Association 2001 Beacon St., Suite 204 Brookline, MA 02146 [phone], [phone] (FAX)

Technology-Department

Sick Kids Need Involved People (SKIP) 216 Newport Drive Severna Park, MD 21146 [phone]

Terminal Illness

Children's Hospice International 901 N. Washington Street, Suite 700 Alexandria, VA 22314 [phone], [phone]

Thrombocytopenia Absent Radius Syndrome

Thrombocytopenia Absent Radius Syndrome Association (TARSA) 212 Sherwood Drive, RD 1 Linwood, NJ 08221-9745 [phone]

Tourette Syndrome

Tourette Syndrome Association 42-40 Bell Blvd. Bayside, NY 11361-2861 [phone], [phone] [phone] (FAX)

Treacher Collins Disease

Treacher Collins Foundation P.O. Box 683 Norwich, VT 05055 [phone]

Tuberous Sclerosis

National Tuberous Sclerosis Assoc. 8000 Corporate Drive Suite 120 Landover, MD 20785 (800) 225-NTSA, [phone] [phone] (FAX)

Turner's Syndrome

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

Urea Cycle Disorders

National Urea Cycle Disorders Found. 4559 Vauxhall Road Richmond, VA 23234 [phone]

Vestibular Disorders

Vestibulor Disorders Associations P.O. Box 4467 Portland, OR 97208-4467 [phone]

Visual Impairments

Retinitis Pigmentosa International Society for Degenerative Eye Diseases P.O. Box 900 Woodland Hills, CA 91365 [phone], [phone]

RP Foundation Fighting Blindness 1401 Mt. Royal Ave., 4th Floor Baltimore, MD 21217 [phone], [phone] [phone] (TTD) [phone] (FAX)

National Retionblastoma Parent Group 603 Fourth Range Road Pembroke, NH 03275 [phone]

Stargardt Disease Self-Help Network P.O. Box 136 West Chicago, IL 60186 [phone]

American Council of the Blind 1155 15th St. NW, Suite 720 Washington, DC 20005 [phone], [phone]

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

Blind Children's Center 4120 Marathon St. Los Angeles, CA 90029-0159 [phone]

Blind Children's Fund 8500 W. Capitol Drive Milwaukee, WI 53222 [phone] [phone] (FAX)

Canadian National Institute for the Blind 1929 Bayview Ave. Toronto, ON Canada M4G 3E8 [phone], [phone] [phone] (FAX)

National Association for Parents of the Visually Impaired P.O. Box 317 Watertown, MA 02272-0317 [phone]

National Association for Visually Handicapped 22 West 21st Street, 6th Floor New York, NY 10010 [phone], [phone] (FAX)

National Federation of the Blind 1800 Johnson St. Baltimore, MD 21230 [phone], [phone] (BBS)

Vision Foundation 818 Mt. Auburn St. Watertown, MA. 02172 [phone] (in MA), [phone]

Institute for Families of Blind Children P.O. Box 54700, Mail Stop #111 Los Angeles, CA 90054 [phone]

National Society to Prevent Blindness 500 E. Remington Rd. Schaumburg, IL 60173-4557 [phone], [phone] [phone] (FAX)

Recording for the Blind 20 Roszel Rd., Princeton, NJ 08540 [phone]

American Printing House for the Blind 1839 Frankfort Ave. P.O. Box 6085 Louisville, KY 40206-0085 [phone] [phone], [phone] (FAX)

Von Hippel-Lindau Syndrome

VHL (Von Hippel-Lindau Syndrome) Family Alliance 171 Clinton Rd. Brookline, MA 02146 [phone] (evenings) [phone] (FAX)

Wegener Granulomatosis

Wegener Granulomatosis Support Group, Inc. P.O. Box 1518 Platt City, MO 64079-1518 (816) 431_2096, [phone]

Williams Syndrome

Williams Syndrome Association P.O. Box 3297 Ballwin, MO 63022-3297 [phone]

Wilson's Disease

Wilson's Disease Association P.O. Box 75324 Washington, DC 20013 [phone], [phone]

Wolf-Hirshhorn Syndrome (4p-)

4p- Parents Group 3200 Rivanna Court Woodbridge, VA 22192 [phone]

Wolf-Hirshhorn Syndrome (4p-) Support Group and Newsletter 5536 Virginia Ct. Amherst, OH 44001 [phone]