Helpful Resources
for family & loved ones of children with trisomy 13 & 18
Searching the web probably won’t give you the most encouraging or helpful information about trisomy disorders. The internet is filled with misinformation about trisomy disorders. You can find some helpful resources here with more encouraging, updated, helpful, and accurate information. (More info coming soon!)
You can also request FREE informational pamphlets here which contain supportive medical information to give out to your medical team!
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SOFT- helpful information for families of children with trisomy 13 or 18. You can find many resources for prenatal care, parenting and advocating for your child here!
Extra To Love- offers diagnosis support boxes, bereavement support, and financial assistance for families facing a trisomy 13 or trisomy 18 diagnosis
The Stella Effect- offers various support for families of children with trisomy 13 or trisomy 18 including financial support
Hope for Trisomy 13 and 18- offers great information including prenatal support, bereavement support, medical information etc.
Trisomy 18 Foundation- offers resources for families of children with trisomy 18
Extra Care Collective: free supportive course on what to expect after a prenatal diagnosis and how to move forward
Support for prenatal diagnosis:Be Not Afraid - provides excellent support for parents facing a trisomy 13 or trisomy 18 diagnosis prenatally and can connect parents with Parent Care Coordinators
Mama Bear Care- empowers women who received a prenatal diagnosis to advocate for their babies
Abel Speaks- provides support and resources for families choosing to carry a child with a life-limiting diagnosis
Prenatal Partners for Life- support, inform and encourage parents who received a prenatal diagnosis
On Angels' Wings - provides therapeutic photography and grief recovery services for families with medically fragile children
Supportive Facebook groups:
Trisomy family stories:Palliative care support:
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