Resources

Congenital Heart Defects
3910 Sierra Blanca Boulevard
Temple, TX 76502
(888) 222-4649
(254) 778-4770
Provides information to the worldwide congenital heart defects community.

Genetic Alliance
4301 Connecticut Avenue, N.W., Suite 404
Washington, DC 20008
(202) 966-5557
An international coalition of individuals, health professionals and genetic support organizations that promotes healthy lives for everyone affected by genetic conditions.

Klinefelter Syndrome and Associates
11 Keats Court
Coto de Caza, CA 92679
(888) 999-9428
An international support group that provides information and support on sex chromosome variations for males and females.

National Down Syndrome Congress
1370 Center Drive, Suite 102
Atlanta, GA 30338
(800) 232-NDSC
(770) 604-9500
National advocacy organization for Down syndrome. Provides support to persons with Down syndrome and their families.

National Organization for Rare Disorders
55 Kenosia Avenue
P.O. Box 1968
Danbury, CT 06813
(800) 999-6673
(203) 744-0100
A federation of health organizations dedicated to helping people with rare diseases.

National Tay-Sachs and Allied Diseases Association
2001 Beacon Street, Suite 204
Brighton, MA 02135
(800) 906-8723
Provides information and support to families affected by Tay-Sachs and allied diseases.

Spina Bifida Association of America
4950 MacArthur Boulevard, N.W., Suite 250
Washington, DC 20007
(800) 621-3141
(202) 944-3285
Provides a toll-free information and referral service and publishes a newsletter.

Support Organization for Trisomy 18, 13 and Related Disorders
2982 South Union Street
Rochester, NY 14624
(800) 716-SOFT
(585) 594-4621
Offers support for parents who have had a child with a chromosome disorder and education to families and professionals interested in the care of these children.

Twin to Twin Transfusion Syndrome Foundation
411 Longbeach Parkway
Bay Village, OH 44140
(440) 889-TTTS
Provides support to families before, during and after pregnancies diagnosed with twin to twin transfusion syndrome.