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.
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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
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American Foundation for the Blind
Product Center, 100 Enterprise Place, P.O. Box 7044, Dover,
DE. 19903-7044
Tel. (800) 829-0500
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American Speech-Language-Hearing
Association
10801 Rockville Pike, Rockville, MD 20852
Tel. (800) 638-8255 or (301) 897-5700
Fax (301) 571-0457
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Angelman Syndrome Foundation, Inc.
414 Plaza Drive, Suite 209, Westmont, Il, 60559
Tel. (800) 432-6435 Fax (630) 655-0391
www.angelman.org
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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
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Association for the Care of Children’
s Health
19 Mantau Road, Mt. Royal, New Jersey 08061
Tel. (609) 224-1742 Fax (609) 244-1742
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The Association for Children with Down
Syndrome
2612 Martin Avenue, Bellmore, NY 11710
Tel. (516) 221-4700
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(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
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(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
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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
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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.
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Children with Attention Deficit
Disorders
499 NW 70th Avenue, Suite 109, Plantation, FL 33317
Tel. (305) 587-3700 or (305) 587-4599
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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.
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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.
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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.
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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
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Down Syndrome Society (National)
666 Broadway, Suite 810, New York, NY 10012
Tel. (800) 221-4602 Fax (212) 460-9330
www.ndss.org
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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
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Epilepsy Foundation
4351 Garden City Drive, Landover, MD 20785-2267
Tel. (800) 332-1000 (301) 459-3700 Fax (301)
577-2684
www.efa.org
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Internet service for parents/
professional to come together, to share concerns, and to ask
questions. Topics range from college savings to special
needs resources.
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Federation of Families for Children's
Mental Health
1021 Prince Street, lst Floor, Alexandria, VA 22314-2971
Tel. (703) 620-3660
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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.
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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.
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Institute on Community
Integration-University of Minnesota
109 Pattee Hall, 150 Pillsbury Drive, S.E.,Minneapolis,
MN 55455
Tel. (612) 624-4512
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International Society for Augmentative
and Alternative Communication
P.O. Box 1762, Station R, Toronto, Ontario m464A3 CANADA
Tel. (416) 421-8377
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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.
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Kids On The Block
9385-C Gerwig Lane, Columbia, MD 21046
Tel. (800) 368-5437
Provides disability awareness
curriculum for local communities using puppets.
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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.
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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.
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National Association for Parents of
the Visually Impaired
P.O. Box 317, Watertown, MA 02771-0317
Tel. (800) 562-6265
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National Association for Visually
Handicapped
22 W 21st Street, 6th Floor, New York, NY 10010
Tel. (212) 889-3141 Fax (212) 727-2931
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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.
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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.
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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.
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National Information Center on
Deafness
Gallaudet University, 800 Florida Avenue NE, Washington, DC,
20002,
Tel. (202) 651-5051
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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.
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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.
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National Organization for the Dually
Diagnosed (NADD)
110 Prince Street, Kingston, NY 12401
Tel. (800) 331-5362
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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.
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National Program on Self-Determination
7 Leavitt Lane, Suite 101, Durham, NH 03824-3522
www.self-determination.org
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PRISM (Parents & Researchers
Interested in Smith-Magenis Syndrome)
76 South New Boston Road, Francestown, NH 03043-3511
Tel. (603) 547-8384
www.smithmagenis.org
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Prader-Willi Syndrome Association
2510 South Brentwood Blvd. Suite 220, St. Louis, MO, 63144
Tel. (800) 926-4797
www.pwsausa.org
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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
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SABE (Self-Advocates Becoming
Empowered)
www.sabeusa.org
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Scoliosis Foundation (National)
72 Mount Auburn Street, Watertown, MA 02172
Tel. 1-800-NSF-MYBACK (673-6922) • Fax (617) 926-0398
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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.
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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
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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
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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.
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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
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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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