Resources

Alliance of Genetic Support Groups
35 Wisconsin Cr. #440, Chevy Chase, MD  20815
Tel. (800) 336-GENE

Provides free kits on how to start a support group and information on genetic disorders.

American Association of Mental Retardation (AAMR)
444 N. Capital Avenue, NW Suite 846, Washington, DC 2001-1512
Tel. (800) 424 -3688
www.aamr.org

Educational information, training & advocacy

American Foundation for the Blind
Product Center, 100 Enterprise Place, P.O. Box 7044, Dover, DE. 19903-7044
Tel. (800) 829-0500

American Speech-Language-Hearing Association
10801 Rockville Pike, Rockville, MD 20852
Tel. (800) 638-8255 or (301) 897-5700      
Fax (301) 571-0457

Angelman Syndrome Foundation, Inc.
414 Plaza Drive, Suite 209, Westmont, Il,  60559
Tel. (800) 432-6435   Fax  (630) 655-0391
www.angelman.org

The ARC of the U.S.
500 E. Border Street, Suite 300, PO Box 1047, Arlington, TX  76010
Tel. (800) 433-5255   or   (817) 261-6003    Fax (817) 277-3491                
www.thearc.org

Association for the Care of Children’ s Health
19 Mantau Road, Mt. Royal, New Jersey 08061
Tel. (609) 224-1742   Fax (609) 244-1742

The Association for Children with Down Syndrome
2612 Martin Avenue, Bellmore, NY  11710
Tel. (516) 221-4700

(National) Autism Hotline/Autism Services Center
605 Ninth Street, Prichard Building, PO Box 507, Huntington, WA  25710-0507
Tel. (304) 525-8014   Fax (304) 525-8026

(National) Autism Society of America
7910 Woodmont Avenue, Suite 650, Bethesda, MD 20814-3015
Tel. (800) 328-8476   Tel. (301) 657-0881   Fax (301) 657-0869
www.autism-society.org

National center for services for individuals with diagnosis of autism/developmental disabilities.
Axis Consultation & Training Ltd. 
340 Machleary Street, Nanaimo, British Columbia, Canada V9R 2G9 
Tel. (250) 754-9939   Fax: (250) 754-9930 
www.normemma.com

Beach Center on Families and Disabilities-The Family Connection
Bureau of Child Research

4138 Haworth Hall, University of Kansas, Lawrence, KS  66045
Tel. (913) 864-7600 or  (800) 854-4938
www.beachcenter.org

A research and training center that conducts research on family issues which are translated into a wide range of research, dissemination, and training projects addressing family well-being across the life span.  Newsletters and a publication catalog available upon request.

Children with Attention Deficit Disorders
499 NW 70th Avenue, Suite 109, Plantation, FL 33317
Tel. (305) 587-3700 or (305) 587-4599
 

Children's Defense Fund
122 C Street NW, Washington DC 20001
Tel. (202) 628-8787

Advocates for all children, especially those who are poor, those who have disabilities, or those belong to a minority group.

Council for Exceptional Children
1920 Association Drive, Reson, VA 22091
Tel. (800) 336-3728   Fax (703) 264-9494
www.cec.sped.org

Professional organization dedicated to improving educational outcomes for individuals with exceptionalities, students with disabilities, and/or the gifted.

CHADD National Office
8181 Professional Place, Suite 201, Landover, MD 20785
Tel. (301) 306-7070   Fax (301) 306-7090
www.chadd.org

Serves individuals with attention-deficit/hyperactivity disorder.
 

Disability Advocacy Suite 101
www.suite101.com/welcome.cfm/disability_advocacy

Disability Rights Activist
www.disrights.org

Down's Syndrome Congress (National)
7000   Peachtree–Dunwoody Road , Lake Ridge 400 Office Park
Building #5, Suite 100, Atlanta, GA 30328
Tel. (800) 232-6372   or   (770) 604-9500    Fax: (770)604-9898
www.ndsccenter.org

Down Syndrome Society (National)
666 Broadway, Suite 810, New York, NY  10012
Tel. (800) 221-4602   Fax  (212) 460-9330
www.ndss.org
 

Easter Seals National Headquarters
230 W. Monroe Street, Suite 1800, Chicago, IL  60606
Tel. (312) 726-6200   (312) 726-4258   (800) 221-6827
Fax (312) 726-1494

Epilepsy Foundation
4351 Garden City Drive, Landover, MD 20785-2267
Tel. (800) 332-1000   (301) 459-3700         Fax (301) 577-2684
www.efa.org

Family Education Network
www.familyeducation.com

Internet service for parents/ professional to come together, to share concerns, and to ask questions. Topics range from college savings to special needs resources.

Federation of Families for Children's Mental Health
1021 Prince Street, lst Floor, Alexandria, VA  22314-2971
Tel. (703) 620-3660

Fragile X Foundation (National)
P.O. Box 190488, San Francisco, California 94119
Tel. (800) 688-8765 or (510) 763-6030 • Fax 510-763-6223
www.nfxf.org

Unites the fragile X community to enrich lives through educational and emotional support, to promote public and professional awareness, and advance research toward improved treatments and a cure for fragile X syndrome.

Goodwill Industries International, Inc.
9200 Rockville Pike, Bethesda, MD 20814
Tel. (240) 333-5200
www.goodwill.org

Provides job skill training and job placement assistance to people with disabilities.

Institute on Community Integration-University of Minnesota
109 Pattee Hall, 150 Pillsbury Drive, S.E.,Minneapolis, MN  55455
Tel. (612) 624-4512

International Society for Augmentative and Alternative Communication
P.O. Box 1762, Station R, Toronto, Ontario m464A3 CANADA
Tel. (416) 421-8377

Institute for Child Health Policy
5700 SW 34th Street, Suite 323, Gainesville, FL. 32608-5367
Tel. (352) 392-5904   Fax (352) 392-8822
www.ichp.ufl.edu 

Electronic libraries devoted to issues in maternal and child health, with emphasis on children with special health care needs and their families.

Kids On The Block
9385-C Gerwig Lane, Columbia, MD 21046
Tel. (800) 368-5437

Provides disability awareness curriculum for local communities using puppets.
 

March of Dimes Birth Defects Foundation
1275 Mamaroneck Avenue, White Plains, NY 10605
Tel. 888-MODIMES (663-4637)
www.modimes.org

Provides information and referral on birth defects, genetics and prenatal care.

MUMS National, Parent –to –Parent Network
150 Custer Court, Green Bay, WI 54301-1243
Tel. (877) 336-5333 (Parents only please)    (920) 336-5333
Fax (920) 339-0995
www.netnet.net/mums/

Nation-wide support group for parents/ foster parents of children with any disability, delay, or disorder.  MUMS provides support through a networking system that matches parents with others whose children have similar conditions.

National Association for Parents of the Visually Impaired
P.O. Box 317, Watertown, MA  02771-0317
Tel. (800) 562-6265

National Association for Visually Handicapped
22 W 21st Street, 6th Floor, New York, NY 10010
Tel. (212) 889-3141   Fax  (212) 727-2931

National Fathers Network
The Merrywood School, 16120 N.E. Eighth Street, Seattle, WA   98008
Tel. (206) 747-4004 James May, Fax  (206) 284-2859

Advocates for fathers through mentor program and newsletter support.

National Health Information Center, U.S.
P.O. Box 1133, Washington DC  20013-1133
Tel. (800) 336-4797   Tel. (301) 565-4167

Provides free information, referral system and publications on rare diseases and the drugs used to threat them. Referrals and some fact sheets are available.

National Information Center for Children & Youths with Disabilities (NICHY)
P.O. Box 1492, Washington DC 20013-1492
Tel. (800) 695-0285   (202) 884-8200        Fax  (202) 884-8441
www.nichcy.org

NICHY offers referrals, state resource sheets, newsletters, and fact sheets about various disabilities at no cost.  Some materials are available in Spanish.

National Information Center on Deafness
Gallaudet University, 800 Florida Avenue NE, Washington, DC, 20002,
Tel. (202) 651-5051

National Information System for Health Related Services
Center for Developmental Disabilities
Benson Building, First Floor, Columbia, SC  29208
Tel. (800) 922-9234

This clearinghouse provides information and referral for parents and professionals concerned with children ages 0-21 who have developmental disabilities or special health care needs.  Referrals are made to federal, state, and private non-profit agencies across the U.S.

National Maternal and Child Health Resource Center, University of Iowa
College of Law Building, Melrose & Byington, Iowa City, IA  52242
Tel. (319) 335-9067

This clearinghouse makes referrals, conducts research, and provides a variety of information to families and professionals.  Publications are available.

National Organization for the Dually Diagnosed (NADD)
110 Prince Street, Kingston, NY  12401
Tel. (800) 331-5362

National Organization for Rare Disorders (NORD)
P.O. Box 8923, New Fairfield, CT  06812-1783
Tel. (800) 999-6673 or  (203) 746-6518 • Fax (203) 746-6481
www.rarediseases.org

Information sheets on various disorders will make referrals and link families with others who are involved with similar disorders for parent-to-parent type support.

National Program on Self-Determination
7 Leavitt Lane, Suite 101, Durham, NH 03824-3522
www.self-determination.org

People First
www.peoplefirst.org

PRISM (Parents & Researchers Interested in Smith-Magenis Syndrome)
76 South New Boston Road, Francestown, NH 03043-3511
Tel. (603) 547-8384
www.smithmagenis.org

Prader-Willi Syndrome Association
2510 South Brentwood Blvd. Suite 220, St. Louis, MO, 63144
Tel. (800) 926-4797
www.pwsausa.org

Research & Training Center  National port and Children's Mental Hospital
Portland State University, P.O. Box 751, Portland, OR  97207
Tel. (800) 628-1696  
www.rtc.pdx.edu

SABE (Self-Advocates Becoming Empowered)
www.sabeusa.org

Scoliosis Foundation (National)
72 Mount Auburn Street, Watertown, MA  02172
Tel. 1-800-NSF-MYBACK (673-6922) • Fax (617) 926-0398

Search and Respond
c/o Exceptional Parent Magazine, Suite 303, Brookline, MA 02146
Tel. (617) 730-5800   Fax (617) 730-8742

Prints letters from people in search of others who are dealing with similar issues.

SibNet
Sibling Support Project, Children's Hospital Medical Center
P.O. Box 5371, CL-09, Seattle, WA  98105-0371
Tel. (206) 368-4911   Fax: (206) 368-4816
www.seattlechildrens.org/sibsupp/

A national program dedicated to the interests of brothers and sisters of people with special health and developmental needs

Spina Bifida Association of America
4590 MacArthur Blvd. NW, suite 250, Washington, DC  20007-4226
Tel. (800) 621-3141 or  (202) 944-3285      Fax  (202) 944-3295
www.sbaa.org

TASH-The Association for Persons with Severe Handicaps
7010 Roosevelt Way, N.E., Seattle, WA. 98115
Tel. (206) 361-8770
www.tash.org

Advocates for integrated education and full inclusive settings.

United Cerebral Palsy Association (UCPA)
1522 K Street NW, Suite 1112, Washington, DC  20005
Tel. (800) 872-5827 or  (202) 842-1266      Fax (202) 842-3519
www.ucpa.org

Research & Training Center on Community Integration
Center on Human Policy, Syracuse University
200 Huntington Hall, Syracuse, NY  13244-2340
Tel. (315) 443-3851

     
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