Down Syndrome
Other Places To Get Help
Online Resources
Down Syndrome General Information Down Syndrome: Health Issues Web Address: www.ds-health.com/ A pediatrician and father of a child with Down syndrome created this site to help medical professionals and parents understand the issues facing people with Down syndrome and their families. The site features news and information, including articles about the genetics of Down syndrome, health issues related to the condition, and practical issues such as toilet training.
Family Village: A Global Community of Disability-Related Resources Family Village, Waisman Center, University of Wisconsin-Madison Web Address: www.familyvillage.wisc.edu This Web site has information about disabilities that affect children and their families. It also has links to many online resources. There is information about Tay-Sachs disease, Down syndrome, cystic fibrosis, group B strep, and many other conditions.
Organizations
American Academy of Pediatrics 141 Northwest Point Boulevard Elk Grove Village, IL 60007-1098 Phone: (847) 434-4000 Fax: (847) 434-8000 E-mail: kidsdocs@aap.org Web Address: www.aap.org The American Academy of Pediatrics (AAP) offers a variety of educational materials, such as links to publications about parenting and general growth and development. Immunization information, safety and prevention tips, AAP guidelines for various conditions, and links to other organizations are also available.
Down's Syndrome Medical Interest Group Children's Centre, City Hospital Campus Nottingham, NG5 1PB UK Phone: 0115 962 7658 ext. 37905 Fax: 0115 962 7915 E-mail: info@dsmig.org.uk Web Address: www.dsmig.org.uk The Down's Syndrome Medical Interest Group (DSMIG) is an informal network of international doctors who aim to share and disseminate medical information about Down's syndrome. The Web site includes a medical library with information developed specifically by DSMIG as well as selected information from other sources.
Although the site is written and designed for health professionals, some information is written specifically for parents and caregivers. This information is intended to be helpful, but is not meant to replace direct medical consultation.
March of Dimes 1275 Mamaroneck Avenue White Plains, NY 10605 Phone: (914) 997-4488 Web Address: www.marchofdimes.com The March of Dimes tries to improve the health of babies by preventing birth defects, premature birth, and early death. March of Dimes supports research, community services, education, and advocacy to save babies' lives. The organization's Web site has information on premature birth, birth defects, birth defects testing, pregnancy, and prenatal care. You can sign up to get a free newsletter and also explore Understanding Your Newborn: An Interactive Program for New Parents.
National Down Syndrome Congress (NDSC) 1370 Center Drive Suite 102 Atlanta, GA 30338 Phone: 1-800-232-NDSC (1-800-232-6372)
(770) 604-9500E-mail: info@ndsccenter.org Web Address: www.ndsccenter.org The National Down Syndrome Congress (NDSC) is a national advocacy organization and a major source of information, support, and empowerment for people with Down syndrome and their families. NDSC's goal is to create a climate in which all people will recognize and embrace the value and dignity of those with Down syndrome. NDSC can provide information on the nearest Down syndrome clinic in your area.
National Down Syndrome Society (NDSS) 666 Broadway New York, NY 10012 Phone: 1-800-221-4602 Fax: (212) 979-2873 E-mail: info@ndss.org Web Address: www.ndss.org The National Down Syndrome Society (NDSS) supports individuals, families, medical researchers, and health professionals to ensure that all people with Down syndrome have the opportunity to achieve their full potential in community life. NDSS also works to discover the underlying causes of Down syndrome through research, education, and advocacy. The organization distributes educational materials, encourages and supports the activities of local parent support groups, sponsors conferences and scientific symposia, and undertakes major advocacy efforts to increase public awareness and acceptance of people with Down syndrome.
National Institute of Child Health and Human Development P.O. Box 3006 Rockville, MD 20847 Phone: 1-800-370-2943 Fax: 1-866-760-5947 toll-free TDD: 1-888-320-6942 E-mail: NICHDInformationResourceCenter@mail.nih.gov Web Address: www.nichd.nih.gov The National Institute of Child Health and Human Development (NICHD) is part of the U.S. National Institutes of Health. The NICHD conducts and supports research related to the health of children, adults, and families. NICHD has information on its Web site about many health topics. And you can send specific requests to information specialists.
The Arc 1010 Wayne Avenue Suite 650 Silver Spring, MD 20910 Phone: 1-800-433-5255
(301) 565-3842Fax: (301) 565-5342 E-mail: info@thearc.org Web Address: www.TheArc.org The Arc of the United States works to include all children and adults with intellectual and developmental disabilities in every community. The Arc provides information on issues that relate to people with Down syndrome and their families, such as important recent research, special programs, and updates on federal funding for people with disabilities. The organization's Web site also directs you to individual Arc chapters throughout the United States.
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| Author: | Debby Golonka, MPH | Last Updated: August 9, 2007 |
| Medical Review: | Adam Husney, MD - Family Medicine David Smith, MD - Family Medicine Michael J. Sexton, MD - Pediatrics | |
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