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Resources

Federal & Federally Funded Information Resources

The federal government supports many clearinghouses, information centers, and institutes that focus on specific topics. In addition to publishing and distributing extensive free material on disability-related subjects, many of the clearinghouses, centers, and institutes also provide referrals to local resources. Staff and funding vary.

Because of small staff, several clearinghouses have asked that their phone numbers not be listed, though they are happy to respond to written-and sometimes faxed or e-mailed-requests for information.

For more information on federal and federally-funded information resources, contact:
NICHCY (National Information Center for Children and Youth with Disabilities)
PO box 1492
Washington, DC 20013-1492
800-695-0285 (voice, TTY)
202-884-8441 fax

NARIC (National Rehabilitation Information Center)
8455 Colesville Rd., Ste. 935
Silver Spring, MD 20910
800-346-2742 (voice)
301-588-9284 (voice, TTY)
301-587-1967 (fax)

NHIC (National Health Information Center)
PO Box 1133
Washington, DC 20013-1133
800-336-4797 (voice)
301-984-4256 (fax).

Disabilities

NICHCY (National Information Center for Children & Youth with Disabilities)
PO Box 1492
Washington, DC 20013-1492

Education

ERIC Clearinghouse on Disabilities & Gifted Children
Council for Exceptional Children
1920 Association Dr.
Reston, VA. 20191-1589
800-328-0272 (voice/ TTY)
ericec@cec.sped.org

(NAEYC) National Association for the Education of Young Children
1509 16th St. NW
Washington, DC 20036-1426
800-424-2460
202-232-8777
202-328-1846 fax
http://www.naeyc.org
pubaff@aeyc.org

National Clearinghouse on Post secondary Education for Individuals with Disabilities
Heath Resource Center
1 Dupont Circle NW, Ste. 800
Washington, DC 20036-1193
800-544-3284 (TTY/voice)
800-939-9320 (TTY/voice)
202-833-4760 (fax)
http://www.acenet.edu
heath@ace.nche.edu

Office of Special Education & Rehabilitation Services Us Department of Education
330 C St. SW
Switzer Bldg., Rm. 3132
Washington, DC 20202-2524
202-205-8241 (voice-TTY)
202-401-2602 (fax)
http://www.ed.gov/offices/

Family health

Agency for Health Care Policy & Research Publications Clearinghouse
PO Box 8547
Silver Spring, MD 20907-8547
800-358-9295
410-381-3150
301-494-2800 (fax)
http://www.ahcpr.gov

National Center for Education in Maternal & Child Health
2000 15th St. N., Ste. 701
Arlington, VA 22201-2617
703-524-7802
703-524-9335 (fax)
http://www.ncemch.org
info@ncemch.org

National Center for Health Statistics
6525 Belcrest Rd.
Hyattsville, MD. 20782
301-436-8500
301-436-3797 (fax)
http://www.cdc.gov/
nchsquery@nch10a.em.cdc.gov

National Health Information Center (NHIC)
PO Box 1133
Washington, DC 20013-1133
800-336-4794
301-984-4256 (fax)
nhicinfo@health.org

National Institute of Child Health & Human Development
NICHD Clearinghouse
PO Box 3006
Rockville, MD 20847
800-370-2943
301-496-7101 (Fax)
http://www.nih.gov/nichd/

National Institutes Of Health (NIH) Office of Rare Diseases
31 Center Dr., Rm. 1803
Bethesda, MD. 20893
301-402-4336
sg18b@nih.gov

National Maternal & Child Health Clearinghouse
2070 Chain Bridge Rd., Ste. 450
Vienna, VA. 22182
703-821-8955
703-821-2098 (fax)
http://www.circsol.com
nmchc@circsol.com

Other federal resources

These federal resources can provide information on programs, services, and related laws and regulations.

Administration on Developmental Disabilities
US Department of Health & Human Services
Washington, DC 20201
202-690-6590
202-690-6415 (TTY)
202-690-6904 (Fax)
Develops and administers programs protecting rights and promoting independence, productivity and inclusion; funds State grants, Protection and Advocacy programs, University Affilated Programs and other national projects.

Division of Birth Defects & Developmental Disabilities
National Center for environmental Health Centers for Disease Control & Prevention
4770 Buford Hwy. Ne
Mailstop F-34
Atlanta, GA. 30341
770-488-7150
770-488-7156 (fax)
Provides assistance to health departments and community organizations to implement prevention programs.

National Council on Disability
1331 F St. NW, Ste. 1050
Washington, DC 20004-1107
202-272-2004
202-272-2074 (TTY)
202-270-2022 (Fax)
http://www.ncd.gov
An independent federal agency working with the President and Congress to increase the inclusion and empowerment of all Americans who have disabilities.

National Library Service for the Blind & Physically Handicapped
Library of Congress
Reference Section
1291 Taylor St. NW
Washington, DC 20543
202-707-5100
202-7070-0744 (TTY)
202-7070-0712(Fax)
nis@loc.gov
http://www.loc.gov/nls
Provides free loan of recorded and braille books and magazines to anyone unable to read standard print materials because of visual or physical disabilities.

President’s Committee on Mental Retardation
Hubert H. Humphrey Bldg., Rm. 352G
200 Independence Ave. SW
Washington, DC 20201
202-619-0634
202-205-9519 (fax)
Advises the President and the Secretary of Health and Human Services on providing services for people with mental retardation. Publishes annual reports, bibliographies, conference reports, and information on such topics as the legal rights of people with mental retardation.

Social Security Administration
6401 Security Blvd.
Baltimore, MD. 21235
800-772-1213 (voice hotline)
800-325-0778 (TTY hotline)
http://www.ssa.gov
Provides information about the Social Security & Supplemental Security Income (SSI) programs, disability benefits, and Medicare.

Matching resources

This directory of "Matching Resources" - both national and international-can help some parents who have children with extremely rare conditions or unique combinations of disabilities. Others may be dealing with unique family situations, such as single parenting, raising twins, or adoption. These networking organizations do parent-to-parent matching based on children’s disabilities and, in some cases, other unique family situations. Most maintain ongoing contact with other groups worldwide.

Association of Birth Defect Children
930 Woodcock Rd., Ste. 225
Orlando, FL. 32803
800-313-2232
407-3457035
407-895-0824 fax
http://www.birthdefects.org
abdc@birthdefects.org

Association of Genetic Support/Australia
740 66 Albion St.
Surry Hils, NSW 2010
Australia
61-2211 1462

Canadian Organization for Rare Disorders (CORD)
PO Box 814
Coaldale, AB CAN T1M 1M7
403-345-3948
403-345-4544

The Centre for Rare Diseases and Disabilities
Copenhagen:
Bredgrade 25
Sct. Annae Passage,
opg F, 5th Fl.
DK-1260 Copenhagen K
Denmark
45-33 91 40 20
45-33 91 40 19fax
Easter Seal Society
250 Ferrand Dr., Ste. 200
Don Mills, ON CAN M3C 3P2
416-421-8377
416-696-1035 fax
info@easterseals. org

MUMS - Mothers United for Moral Support
c/o Julie Gordon
150 Cousta Ct.
Green Bay, WI 54301-1243
920-336-5355
920-339-0995 Fax
mums@netnet.net

National Organization for Rare Disorders (NORD)
100 Rt. 37, PO Box 8923
New Fairfield, CT. 06812-8923
800-999-6673 Voice
203-746-6927 TTY
203-746-6481 fax

NPSIS - National Parent to Parent Support and Information Services
PO Box 907
Blue Ridge, GA. 30513
800-651-1151
706-632-8830
judd103w@wonder.em.cdc.gov

Parent-to Parent Link Program
The Easter Seat Society, Ontario
1185 Eglington Ave., Ste. 800
Don Mills, ON CAN M3C 3P2
416-421-8377
416-696-1035 fax
http:/www.easterseal.org
info@easterseals.org

Rare Chromosome Disorder Group
160 Locket Rd.
Harrow Weald
Middlesex
England HA3 7NZ
44-1270 250221
44-1270 250244 fax

Other resources

Search and Respond
c/o Exceptional Parent Magazine
555 Kinderkamack Rd.
Oradell, NJ 07649-1517
201-634-6550
201-634-6570 fax
http://www.eparent.com
Exceptional Parent magazine accepts letters from parents and professionals searching for information, networking, or advice from others on a disability or related problem. Some are selected for publication in our monthly Search column. Anyone offering a suggestion may write a Respond letter, which will be forwarded and may also be published.

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HomeParents' CornerParents' Corner ArchiveProfessional CornerProfessional Corner ArchiveCase in ProgressCase in Progress ArchiveInspirational MessagesInspirational Messages ArchiveDirect ServicesConsultingSeminars, Workshops, and MoreSpecial EventsRecommended ReadingRecommended Reading for ChildrenAsk the Experts News FlashCurrent Question and AnswerUnderstanding the LingoAbout the TeamTestimonialsFees, Location, and DetailsTypical Development: MakennaTypical Development: LaceyResourcesPrivacyStatementConfidentiality

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Articles written by Pediatric Services staff are copyright by Pediatric Services.
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Last modified: January 26, 2013