Trisomy 13 Syndrome ~ Patau Syndrome ~ Life Expectancy ~ Medical treatments and care for children - a free download!

www.trisomy.org 

Having a Living Survivor with full trisomy 13, www.Trisomy.org is my go-to site for the last 15 years when searching for family support information or professional resources to share with Natalia's Doctors and Therapists. Please check out their HOME Page of the website. They have a wealth of information. ~ ThereseAnn, mom to Natalia Marie (Living with Trisomy 13, 15 years old in 2015)

*Click here for Natalia Marie's SOFT story page

SOFT is the internet’s most complete source of medical and family resources for trisomy 18 & 13.

VISIT the SOFT WEBSITE for an extensive  library of Medical Publications, including research, care guidance and quarterly newsletters.  

“The Carebook:” The nationally recognized book about caring for children with trisomy 18 and 13 – a free download!

What is Trisomy 18? or 13? or Related Disorders?

Trisomy refers to having three copies of a chromosome in a cell, rather than the usual two…read What is Trisomy

♥ Trisomy 18 occurs in about 1 in 7,000 live births and is the result of an extra copy of the 18th chromosome being present in cells.…read Trisomy 18 Facts.

♥ Trisomy 13 occurs in about 1 in 10,000 live births and is the result of an extra copy of the 13th chromosome being present in cells.…read Trisomy 13 Facts.

♥ What are Related Disorders? Mosaicism, partials, translocations and other chromosomal disorders are variations of a full trisomy…

Neonatal Research Blog on the family experience of trisomy 13 and 18

TRISOMY 13 LIFE 

facebook group 

Click here

PRENATAL, PRE-BORN, LIVING and GRIEF Support.

Many families gathering together again from the

Original Living with Trisomy 13 .org Community.

Currently the livingwithtrisomy13.org  is rolling to SOFT at Trisomy.org for quick and immediate support literature.

TRISOMY LIFE trisomy 13 Patau syndrome trisomy 18 Edwards syndrome and images 

“Our children are not a diagnosis”: the family experience of trisomy 13 and 18

One of the most well-published academic neonatologists posted an article about our trisomy 13/18 children. He offers great advice to his colleagues. 
Click here for full Neonatal Research Blog article

Many wonderful comments too!!!
50 Plus at this posting!
Click here

33 Years Strong SOFT Organization for Trisomy 18, 13 and Related Disorders has been the ROCK of Trisomy Families with yearly conventions, medical literature, books and quarterly newsletters, be sure to view their publications off the website. 
trisomy.org 

SOFT has been supporting Trisomy Families for 33 + Plus years

For Trisomy 18, 13 and Related Support, Please see the SOFT site for a NEW Family Packet http://www.trisomy.org

Collage created by Barb Farlow International Patient Safety Advocate 
(Text within image)
OUR COMMUNITY HAS A VOICE
Janvier A, Farlow B, Wilfond B. The Experience of Families With Children With Trisomy 13 and 18 in Social Networks. 
Pediatrics  July 23 10.1542/peds.2012-0151
With heartfelt gratitude to Dr. Annie Janvier and Dr. Ben Wilfond 

Natalia - Full Trisomy 13 http://www.trisomyfavoritethings.blogspot.com

The Ultimate Trisomy Information Center for Trisomy 18, 13 and Related Disorders

SOFT USA - The Largest Global Trisomy Network of Support 
Supporting Families for 25 Plus years with Trisomy Related Syndromes 

Pam’s Papers:  Research and Commentary Papers about Children with Trisomy Disorders, written by SOFT Member Pamela Healey, PhD. http://www.trisomy.org/resources/pams-papers

What Should We Do Now? Necessary Information After a Diagnosis of Trisomy 18 or Trisomy 13  

The Medical Intervention Debate   

The Culture of SOFT 

and more.....

International SOFT Support Sites
America USA
Australia
Canada
England
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Ireland
Italy
Japan
New Zealand
Romania
Scotland

SOFT has been supporting Trisomy Families for 33 + Plus years

For Trisomy 18, 13 and Related Support, Please see the SOFT site for a NEW Family Packet http://www.trisomy.org