Use this directory to find Patient Support Organisations including condition and diagnosis-specific formal and informal groups and Disabled Persons and Family Organisations
Search for a particular diagnosis or condition using the search box. If you know of an organisation that is missing from the list, please submit a new suggestion.
If you are looking for mental health and wellbeing related supports, such as therapists and peer support, please search the Centre of Perinatal Excellence e-COPE directory.
We envision a future where Trisomy 18 is a preventable and treatable condition and all parents have access to compassionate, knowledgeable care that respects the humanity and potential of their child diagnosed with Trisomy 18.
Our mission is to encourage the search for treatments and preventions of Trisomy 18, to educate and support medical professionals, and to create a caring community that embraces ALL families impacted by the Trisomy 18 diagnosis of a much-wanted child.
Before our founding in 2003, learning about Trisomy 18 syndrome was difficult for parents and the public—especially in the context of prenatal diagnoses for expectant parents. Working together with our community members, the Foundation’s efforts have led to many advances in how Trisomy 18 is understood and how health professionals respond to newly-diagnosed parents in the United States, but there is so much that still needs changing. And the need for investments in genetic research to identify pathways to treatments has never been greater.
We tirelessly advocate for research innovations and new approaches to the search for treatments and preventions that can save lives and dramatically reduce the incidence rate of Trisomy 18 conceptions and increase survival rates. We provide a supportive community for everyone impacted by Trisomy 18 syndrome and related disorders. We always have the latest and most accurate information, and we educate everyone—from patients and families to medical professionals and the general public—about Trisomy 18 syndrome and related disorders.
— From the Trisomy 18 Foundation website.
Trisomy 18, Edwards syndrome’, Edwards
