Down Syndrome and Special Needs Resources
- Angel Unaware: A Touching Story of Love and Loss, Dale Evans Rogers, Revell, 2004. Shares how Roy Rogers and Dale Evans Rogers' Down syndrome child helped draw them closer to God and to each other.
- Beach Center on Families and Disabilities
3111 Haworth Hall
The University of Kansas
Lawrence, KS 66045-7516
Phone: 913-864-7600
Fax: 913-864-7605
URL: www.beachcenter.org
Offers newsletters, publications and fact sheets. Maintains a directory of parent-to-parent programs for families with special needs children, including NICU babies.
- Directory of Down Syndrome Internet Sites
URL: www.downsyndrome.com
Lists comprehensive Down syndrome resources on the internet.
- Down Syndrome: Health Issues
URL: www.ds-health.com
Promotes the health of children with Down syndrome and empowers parents with knowledge.
- Down Syndrome: Understanding the Gift of Life
URL: www.nas.com/downsyn/
Provides up-to-date information from experienced professionals and veteran parents.
- Gabriel’s Angel Network: Celebrating the Lives of Children with Disabilities (GAN)
URL: www.GabrielsAngelNetwork.org
Shares parents’ stories and connects them to each other through interactive technology.
- Genetic Alliance
4301 Connecticut Avenue, NW, #404
Washington, DC 20008-2304
Phone: 202-966-5557
Toll Free: (800) 336-GENE (4363), Helpline only.
Fax: 202-966-8553
Email: alliance@capaccess.org
URL: www.geneticalliance.org
Provides educational materials and referrals to consumers regarding most birth defects and genetic disorders. Referrals to parents, genetics professionals, support groups and organizations.
- March of Dimes Birth Defects Foundation
1275 Mamaroneck Avenue
White Plains, NY 10605
Phone: 914-428-7100
URL: www.marchofdimes.com
Offers information, local referrals and education on many prenatal, pregnancy and child related issues with a focus on healthy mothers and healthy babies.
- National Center for Education in Maternal and Child Health
2000 15th Street North, Suite 701
Arlington, VA 22201-12617
Phone: 703-524-5802
Fax: 703-524-9335
URL: www.ncemch.org
Provides program development, education, and state-of-the-art knowledge to improve the health and well-being of the nation's children and families.
- National Down Syndrome Congress (NDSC)
1370 Center Drive, Suite 102
Atlanta, GA 30338
Phone: 770-604-9500
Toll Free: 800.232.NDSC (6372)
Fax: 770-604-9898
E-Mail: info@ndsccenter.org
URL: www.ndsccenter.org
Offers support, literature and education.
- National Information Center for Children and Youth With Disabilities (NICHCY)
Box 1492
Washington, DC 20013-1492
Phone: 202-884-8200
Toll Free: 800-695-0285 v/tty
Fax 202-884-8441
Email: nichcy@aed.org
URL: www.nichcy.org
Provides information on disabilities and disability-related issues.
- National Parent to Parent Support & Information System, Inc. (NPPSIS)
P.O. Box 907
Blue Ridge, GA 30513
Toll Free: 800-651-1151 (for parents)
Fax 706-632-3826
URL: www.NPPSIS.org
Provides over 500 active local parent-to-parent programs for parents who are experiencing a disability or chronic illness in their family.
- National Society of Genetic Counselors, Inc.
401 N. Michigan Avenue, Chicago, IL 60611
Phone: 312-321-6834
Fax: 312-673-6972
Email: FYI@nsgc.org
URL: www.nsgc.org
Provides patient educational materials regarding genetic counseling and some common disorders.
- Office for Genetics and Children with Special Health Care Needs (OGCSHCN)
Department of Health and Mental Hygiene
Family Health Administration
Office for Genetics and Children with Special Health Care Needs
201 West Preston Street, 421A
Baltimore, Maryland 21201
Phone: 410-767-6730
Fax: 410-333-5047
URL: http://www.fha.state.md.us/genetics/
Provides education to patients, parents, professionals, voluntary organizations and the general public about genetics, genetic disorders, birth defects, and genetic services.
- S.O.F.T. (Support Organization for Trisomy 18, 13 & related disorders)
c-o Barb Vanherreweghe
2982 South Union Street
Rochester, NY 14624
Phone: 716-594-4621
Toll Free: 800-716-SOFT (7638)
URL: www.trisomy.org
Offers support for parents who have a child with a chromosome disorder, and education to families and professionals interested in the care of these children.
- Spina Bifida Association of America
4590 MacArthur Blvd., NW, Suite 250
Washington, DC 20007-4226
Phone: 202-944-3285
Toll Free: 800-621-3141
Fax: 202-944-3295.
Email: sbaa@sbaa.org
URL: www.sbaa.org
Offers information referrals to local groups and agencies, a newsletter, literature and advocacy.
- The National Down Syndrome Society (NDSS)
666 Broadway
New York, NY 10012
Phone: 212-460-9330 9:00 am to 5:00 pm Eastern Time
Toll Free: 800-221-4602
Fax: 212-979-2873
Email: info@ndss.org
URL: www.ndss.org
Offers families a wealth of information and resources.
- Down With Gabriel
URL: www.DownWithGabriel.com
Log on to http://content.impactengine.com/ieViewer.php?tid=61789 to see a touching PowerPoint created by a family with a Down syndrome child.
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