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Loss and grief


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    Genetics and birth defects (resources)

    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.

    Coping with loss

    Information for grieving families

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