Trisomy 18

Organizations

Are there good support groups for Trisomy 18?

There are good support groups for Trisomy 18.

The Chromosome 18 Registry and Research Society (http://www.chromosome18.org)

Trisomy 18 Foundation (http://www.trisomy18.org)

Chromosome Disorder Outreach (http://www.chromodisorder.org)

SOFT (Support Organization for Trisomy) (http://trisomy.org)

The Arc (http://www.thearc.org)

References
  • http://www.chromosome18.org
  • http://www.trisomy18.org
  • http://www.chromodisorder.org
  • http://trisomy.org
  • http://www.thearc.org
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Where do I find other families with a child with Trisomy 18?

What organizations are out there to help parents of a child with Trisomy 18 with the perinatal period?

What are some resources to help me capture and remember my child with Trisomy 18?

Where can I learn more about Trisomy 18?

Where do I find other families with a child with Trisomy 18?

Other people with a child with Trisomy 18 can be found through online support groups.

The Chromosome 18 Registry and Research Society (http://www.chromosome18.org)

Trisomy 18 Foundation (http://www.trisomy18.org)

Chromosome Disorder Outreach (http://www.chromodisorder.org)

SOFT (Support Organization for Trisomy) (http://trisomy.org)

The Arc (http://www.thearc.org)

References
  • http://www.chromosome18.org
  • http://www.trisomy18.org
  • http://www.chromodisorder.org
  • http://trisomy.org
  • http://www.thearc.org
What organizations are out there to help parents of a child with Trisomy 18 with the perinatal period?

SOFT (Support Organization for Trisomy) has gathered a list of organizations that can help parents during this time (http://trisomy.org/?page_id=5085). Northside Hospital in Atlanta, GA has H.E.A.R.T.stings Perinatal Bereavement Office that gathers a list of resources as well (http://www.northsidepnl.com/our-favorite-resources.html).

References
  • http://trisomy.org/?page_id=5085
  • http://www.northsidepnl.com/our-favorite-resources.html
What are some resources to help me capture and remember my child with Trisomy 18?

Some resources that help parents capture and remember their child with Trisomy 18 include:

The Angel Pics Project (http://www.babyangelpics.com)

Casting Keepsakes (http://www.castingkeepsakes.com)

The Kendall Keepsake Foundation (http://www.kendallkeepsake.org/About.php)

Molly Bears (http://www.mollybears.com)

Now I lay me down to sleep (ttps://www.nowilaymedowntosleep.org"]https://www.nowilaymedowntosleep.org"]ttps://www.nowilaymedowntosleep.org)

References
  • http://www.babyangelpics.com
  • http://www.castingkeepsakes.com
  • http://www.kendallkeepsake.org/About.php
  • http://www.mollybears.com
  • https://www.nowilaymedowntosleep.org
Where can I learn more about Trisomy 18?

The following provide information about Trisomy 18:

Lucile Packard Children’s Hospital at Stanford: Trisomy 13 and Trisomy 18 (http://www.stanfordchildrens.org/en/topic/default?id=trisomy-18-and-13-90-P02419)

Minnesota Department of Health (http://www.health.state.mn.us/divs/cfh/topic/diseasesconds/trisomy18.cfm)

Texas Department of State Health Services (http://www.dshs.state.tx.us/birthdefects/risk/risk11-trisomy18.shtm)

UT Health Science Center (http://www.pediatrics.uthscsa.edu/centers/Chromosome18/)

References
  • http://www.stanfordchildrens.org/en/topic/default?id=trisomy-18-and-13-90-P02419
  • http://www.health.state.mn.us/divs/cfh/topic/diseasesconds/trisomy18.cfm
  • http://www.dshs.state.tx.us/birthdefects/risk/risk11-trisomy18.shtm
  • http://www.pediatrics.uthscsa.edu/centers/Chromosome18/

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