About Us

About Us

Our mission is to provide a caring, supportive worldwide community for families impacted by Trisomy 18 syndrome and related disorders, to advocate for compassionate, supportive care, and to fund research that seeks to reduce or eliminate life-threatening and quality of life challenges facing patients with Trisomy 18.

We envision a world where Trisomy 18 is a preventable and treatable condition and all parents have access to compassionate, knowledgeable care that respects the humanity of their child diagnosed with Trisomy 18.

Our Story

The Trisomy 18 Foundation was founded in 2003 by a mother who had lost a son to Trisomy 18. Since then, our organization has been devoted to educating families and healthcare professionals about the condition and working towards a brighter future for our children. For the past two decades, our work has helped families have access to the resources they need to understand their child’s diagnosis and make informed decisions about their child’s health while also leading to advances in how Trisomy 18 is understood and how health professionals respond to newly-diagnosed parents.

There is still much work to be done, though. Research is critical to creating a brighter future for children with Trisomy 18 syndrome. We are committed to funding research that seeks to reduce or eliminate life-threatening and quality of life challenges facing patients with Trisomy 18 and to advancing research by sharing research study opportunities with our Trisomy 18 community.

A diagnosis of Trisomy 18 starts a journey of uncertainty. We are here to walk that journey with you.

Connect With Us

You have questions. We’re here to help.