Resources for Health Care Professionals

Medical and Clinical Web Sites

National Down Syndrome Society (NDSS)
Website: www.ndss.org
The NDSS site is the most comprehensive on-line resource on Down syndrome. The site includes a number of health and medical-related articles and links.

Down Syndrome Health Issues
Website: www.ds-health.com
This comprehensive Web site covers topics related to health care issues and Down syndrome. The site contains numerous articles and links to other resources.

Down Syndrome Growth Charts and Head Circumference Charts
Website: http://www.growthcharts.com
The Down Syndrome Growth Charts and Down Syndrome Circumference Charts are available on this site for various ages and developmental stages.

National Organizations

National Down Syndrome Society (NDSS)
666 Broadway, Suite 810, New York, NY 10012
Tel.: (800) 221-4602 or (212) 460-9330; Fax: (212) 979-2873
Website: www.ndss.org; E-mail: This e-mail address is being protected from spambots. You need JavaScript enabled to view it
Through education, research and advocacy, NDSS seeks to improve the lives of individuals with Down syndrome and their families.

Association of University Centers on Disabilities
1010 Wayne Avenue, Suite 920, Silver Spring, MD 20910
Tel.: (301) 588-8252; Website: www.aucd.org
AUCD has 67 UCEDDs with at least one found in every state and territory in the U.S. Each is affiliated with a major research university.

American Association on Intellectual and Developmental Disability (AAID)
American Association on Mental Retardation (AAMR)
444 North Capitol Street, NW, Suite 846, Washington, D.C. 20001-1512
Tel.: (202) 387-1968 or (800) 424-3688; Fax: (202) 387-2193; Website: www.aamr.org
AAMR promotes policies, research, effective practices, and universal human rights for people with intellectual disabilities.

National Information Center for Children and Youth with Disabilities (NICHCY)
P.O. Box 1492, Washington, D.C. 20013
Tel.: (800) 695-0285; E-mail: This e-mail address is being protected from spambots. You need JavaScript enabled to view it ; Website: www.nichcy.org
An information clearinghouse, providing free information on disability-related issues, ages birth to 22.

The Arc
1010 Wayne Avenue, Suite 650, Silver Spring, MD 20910
Tel.: (800) 433-5255; Website: www.thearc.org
The Arc provides advocacy and other services for people with mental retardation and their families.

Subject-Specific Organizations

ADOPTION: National Child Welfare Resource Center for Adoption (NCWRCA)
16250 Northland Drive, Suite 120, Southfield, IN 48075
Tel.: (248) 443-0306; Website: www.nrcadoption.org
Provides training, consultations, and technical assistance towards improving adoption and post-adoption services for children with special needs.

AUTISM: Autism Society of America
7910 Woodmont Avenue, Suite 300, Bethesda, MD 20814
Tel.: (800) 3AUTISM; Fax: (301) 657-0869; Website: www.autism-society.org
The mission of the Autism Society of America is to promote lifelong access and opportunity for all individuals within the autism spectrum, and their families, to be fully participating, included members of their community. This is achieved through education, advocacy, public awareness and research.

BEHAVIOR: Beach Center on Families and Disability
3111 Haworth Hall, University of Kansas, Lawrence, KS 66045
Tel.: (785) 864-7600; Website: www.beachcenter.org
The Beach Center conducts research on the causes of challenging behavior and strategies for positive behavioral support. The Center publishes a newsletter and provides lists of materials and fact sheets.

BENEFITS: Social Security Administration
6401 Security Blvd., Baltimore, MD 21235
Tel.: (800) 772-1213; Website: www.ssa.gov/disability
Information is provided about programs and services, as well as policy, research and other topics.

DENTISTRY: Academy of Dentistry for Persons with Disabilities (Special Care Dentistry)
401 North Michigan Avenue, Suite 2200, Chicago, Il 60611
Tel: (312) 527-6764; Fax: (312) 673-6663; E-mail: This e-mail address is being protected from spambots. You need JavaScript enabled to view it ; Website: www.scdonline.org
This professional membership organization provides technical and moral support for clinicians.

EARLY INTERVENTION: National Early Childhood Technical Assistance Center (NECTAC)
Campus Box 8040, UNC-CH, Campus Box 8040, UNC-CH
Tel.: (919) 962-2001; Website: www.nectac.org
The Center provides a national directory of programs and information about early intervention services as required by the Individuals with Disabilities Education Act (IDEA) for children with disabilities.

EDUCATION: The ERIC Clearinghouse on Disabilities and Gifted Education (ERIC EC)
The Council for Exceptional Children, 1920 Association Drive, Reston, VA 20191
Tel.: (800) 328-0272 or (703) 264-9449; Website: www.ericec.org; E mail: This e-mail address is being protected from spambots. You need JavaScript enabled to view it
ERIC EC gathers and disseminates literature, information, and resources on the education and development of individuals of all ages who have disabilities and/or who are gifted.

EMPLOYMENT: Virginia Commonwealth University Rehabilitative Research and Training Center
1314 West Main Street, P.O. Box 842011, Richmond, VA 23284-2011
Tel.: (804) 828-1851; Website: www.worksupport.com
A gateway to information, resources, and services regarding the employment of people with disabilities.

FATHERHOOD: National Fathers Network
Kindering Center, 16120 NE Eighth Street, Bellevue, WA 98008-3937
Tel.: (425) 653-4286; Website: www.fathersnetwork.org
The network celebrates and supports fathers and families raising children with special health care needs and developmental disabilities.

FEEDING: LaLeche League International
1400 North Meacham Road, Schaumberg, IL 60173
Tel.: (800) LALECHE or (847) 519-7730; Website: www.lalecheleague.org
LaLeche League provides information and resources to assist mothers with breastfeeding their babies, including information specific to breastfeeding a baby with Down syndrome.

LIFE PLANNING: National Family Caregivers Association
9621 East Bexhill Drive, Kensington, MD 20895-3104
Tel.: (301) 942-6430
This association is a not-for-profit membership organization dedicated to improving the quality of life for family caregivers by providing services through research, information and education, support validation, respite care and advocacy. They operate a 24-hour help line.

MENTAL HEALTH: National Association for the Dually Diagnosed (NADD)
132 Fair Street, Kingston, NY 12401
Tel.: (914) 331-4336 or (800) 331-5362; Fax: (914) 331-4569; Website: www.thenadd.org
NADD advocates for appropriate services and training concerning persons who have mental retardation and mental illness. The association also provides information and referral services, distributes educational materials, hosts conferences, publishes a newsletter and publications.

PARENT SUPPORT: Parent Training and Information Centers
Technical Assistance Alliance for Parent Centers, 4826 Chicago Avenue South,
Minneapolis, MN 55417
Tel.: (612) 827-2966; Website: www.taalliance.org; E-mail: This e-mail address is being protected from spambots. You need JavaScript enabled to view it
Parent Training and Information Centers are funded by the Office of Special Education Programs of the U.S. Department of Education. The centers, located in each state, provide training and information to parents to help them meet the educational needs of their children.

POST-SECONDARY EDUCATION: HEATH Resource Center
American Council on Education, One Dupont Circle, Suite 800, Washington, DC 20036
Tel.: (800) 544 3284 or (202) 939 9320; Fax: (202) 833-4760
Website: www.heath-resource-center.org; E mail: This e-mail address is being protected from spambots. You need JavaScript enabled to view it
The HEATH Center is the national clearinghouse on post-secondary education for individuals with disabilities. Supported by the U.S. Department of Education, the Center serves as an information exchange about educational support services, policies, procedures, adaptations, and opportunities.

PROTECTION/ADVOCACY: National Association of Protection and Advocacy Systems
900 2nd Street NE, Suite 211, Washington, DC 20002
Tel.: (202) 408-9514; Website: www.narpa.org
The Protection and Advocacy (P&A) System is a nationwide network of congressionally mandated, legally-based disability rights agencies. P&A agencies provide legal representation and other advocacy services, under all federal and state laws, to all people with disabilities.

RECREATION: Special Olympics, Inc.
1325 G Street, NW, Suite 500, Washington, DC 20005
Tel.: (202) 628-3630; Fax: (202) 824-0200; Website: www.specialolympics.org
Special Olympics is an international program of year-round sports training and athletic competition for more than one million children and adults with mental retardation.

RESEARCH: National Institute of Child Health and Human Development (NICHD)
NIH, Bldg 31, Room 2A32, MSC 2425, 31 Center Drive, Bethesda, MD 20892-2425
Tel.: (800) 370-2943; Website: www.nichd.nih.gov
NICHD supports and conducts research on various health-related topics in Down syndrome.

RESPITE CARE: National Respite Locator Service
800 Eastowne Drive, Suite 105, Chapel Hill, NC 27514
Tel.: (800) 773-5433; Website: www.respitelocator.org
The service helps parents, caregivers, and professionals find respite services in their state and local area.

SEXUALITY: Sexuality Information and Education Council of the United States (SIECUS)
130 West 42nd Street, Suite 350, New York, NY 10036
Tel.: (212) 819-9770; Website: www.siecus.org
SIECUS provides resources on sexuality-related issues and sex education for people with developmental disabilities. A comprehensive bibliography of resources is available.

SIBLINGS: Sibling Support Project
Kindering Center, 6512 23rd Ave NW, #213, Seattle, WA 98117
Tel.: (206) 297-6368; Website: http://www.siblingsupport.org
The Sibling Support Project is a national program dedicated to the interests of brothers and sisters of people with special health and developmental needs.

Publications

American Journal on Mental Retardation
AAMR, 444 North Capital Street, NW, Suite 846, Washington, D.C. 20001-1512
Tel.: (800) 424-3688; Web site: www.aamr.org
This bi-monthly publication for professionals features reports on current research in the biological, behavioral and educational sciences. Articles include various topics related to developmental disabilities including prevention, health risks, aging, bio-medics, behavior and clinical interventions.