Trisomy 13 Parent Support

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Trisomy Support Groups for Trisomy 13 and Trisomy 18 ...

    https://www.internationaltrisomyalliance.com/trisomy-support-groups.html
    Families often use social networks like Facebook to ask questions and share with other parents. Please use the contact form if your group is focused primarily on providing support and information to parents of children with trisomy 13 and 18, and you would like your organization to be added to our links.

Trisomy 18, Trisomy 13 information has been provided for ...

    https://trisomy.org/
    SOFT has provided trisomy 18 & trisomy 13 information, resources, support and an annual conference to families since 1980.

trisomy

    https://trisomy.org/other-trisomy-18-or-13-supportgroups/
    ♥ The International Trisomy 18/13 Alliance ITA is a volunteer, not-for-profit organization focusing on trisomy 13 and trisomy 18, (also known as Patau and Edwards syndromes respectively). The mission is to offer trisomy 13 and trisomy 18 support groups, physicians and other professionals, accurate information to enable parents to make ...

Trisomy 13 Support & Resources - Day For Night

    http://dayfornight.com/jmjtrisomy13archive/resources/trisomy-13-support.htm
    The Trisomy 18/13 Journey SOFT Support Organization for Trisomy Trisomy 13 – Wikipedia and Related Posts Trisomy 18 – Wikipedia and Related Posts . For parents who have lost a child: The MISS Foundation offers support for parents who have lost a child under any circumstance. The online forums help parents support each other in all areas of ...

Trisomy 13 Support Groups Help Parents - WOWT

    https://www.wowt.com/home/headlines/Trisomy-13-Support-Groups-Help-Parents-166069616.html
    Aug 13, 2012 · Parents of children with a genetic disorder called Trisomy-13 and -18 have difficult decisions to make about their child's welfare. A new study finds online support groups may be influencing their ...

Trisomy

    https://trisomy.org/what-should-we-do-now-necessary-information-after-a-diagnosis-of-trisomy-18-or-trisomy-13/
    Third, information is available from parents, who are caring for their children with trisomy 18 and trisomy 13. Trisomy 18 or trisomy 13 each represent a grim diagnosis requiring the parents to grieve the expected child and embrace a child with a previously unknown diagnosis of limited developmental potential and medical fragility.

Care of the Infant and Child with Trisomy 18 or Trisomy 13

    http://trisomy.org/wp-content/uploads/2014/08/Carebook-updated-8-15-14.pdf
    born with trisomy 18 or trisomy 13. Kris Holladay, mother of Kari (9/8/77 - 6/3/88) is recognized and honored as the founding parent of the Support Organization for Trisomy 18, 13 and Related Disorders (SOFT). Barb Van Herreweghe, mother of Stacy (5/21/81) is acknowledged for her many years of leadership as the President of SOFT.

Trisomy 13 LIFE Support - Living with Patau Syndrome ...

    https://www.facebook.com/groups/Trisomy13/
    Trisomy 13 LIFE Support - Living with Patau Syndrome has 2,007 members. Group Questions must be answered before a new member is approved. *Check your...

Trisomy 13 Genetic and Rare Diseases Information Center ...

    https://rarediseases.info.nih.gov/diseases/7341/trisomy-13
    59 rows · Mar 17, 2016 · Most cases of trisomy 13 are caused by random events during the formation …

Trisomy 13 - Genetics Home Reference - NIH

    https://ghr.nlm.nih.gov/condition/trisomy-13
    Oct 15, 2019 · Trisomy 13, also called Patau syndrome, is a chromosomal condition associated with severe intellectual disability and physical abnormalities in many parts of the body.Individuals with trisomy 13 often have heart defects, brain or spinal cord abnormalities, very small or poorly developed eyes (microphthalmia), extra fingers or toes, an opening in the lip (a cleft lip) with or without an opening ...



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