For Families

The Chromosome 18 Registry & Research Society

The Chromosome 18 Registry & Research Society helps parents, grandparents, caregivers, extended family, siblings, and individuals with chromosome 18 conditions connect to the other 4,000 families in the USA and another 2,000 around the world. They created and support the Chromosome 18 Clinical Research Center at UT Health San Antonio, a dedicated research center for chromosome 18 conditions. Their mission is to To help people with chromosome 18 abnormalities overcome the obstacles they face so they may lead happy, healthy, and productive lives.

Courageous Parents Network

Courageous Parents Network (CPN) presents educational resources in an array of formats—video, audio story, downloadable guides, blogs, events, and more—with a singular goal: to give parents confidence that they are being the best possible advocate for their child. Through this work and in partnership with clinicians, they seek to transform the care experience both delivered and received.

The Edwards’ Syndrome Association

The Edwards’ Syndrome Association is a community of families committed to advocacy, equal care, education, and rights of people with Edwards’ Syndrome and their families. They offer multiple resources and programs aimed at honoring and celebrating children with Edwards’ Syndrome including NICU packages, milestone gifts, bereavement packages, a virtual 3.18K run to raise awareness, and opportunities to connect and share stories.

The E.WE Foundation

The E.WE Foundation provides resources and practical support to families impacted by trisomy 18 (Edwards’ Syndrome) and other rare diseases, while reshaping medical perspectives through advocacy, education, and public policy. Their family-facing programs include STRIPE for financial support, ZEBRA for mental and emotional care, and LEAP for health literacy resources, patient advocacy, and community engagement.

Hope for Trisomy

Hope for Trisomy supports families through practical help, connection to resources, and community. They offer equipment grants (up to $500) for therapy devices and other essentials, share curated information and support group links on their website, provide free care packages for families impacted by trisomy 13 or 18, and host an annual gathering in Arlington, Texas for those navigating or impacted by trisomy 13 or 18.

SOFT: Support Organization for Trisomy 18, Trisomy 13 and Related Disorders 

SOFT provides support, information, and connection for families affected by trisomy 18, trisomy 13, and related conditions. They offer step-by-step resources and educational materials to help families navigate the care process, offer a platform to connect with other families, and host an annual family conference that brings together parents, caregivers, and medical experts for learning and community.

The Stella Effect

The Stella Effect provides direct support to families impacted by trisomy 13 or 18. They offer resources to help families celebrate their child, find the care they need, and connect with other families. Families can apply for financial assistance for moves related to accessing care and for celebrations that honor their child’s life, and can also join their Facebook community. The Stella Effect is also looking to host grief retreats for families in the coming years.

Trisomy 18 Foundation

The Trisomy 18 Foundation helps to improve the lives of the children and families impacted by trisomy 18 by providing support and connecting families, advocating for compassionate, supportive care, and advancing research into the future of trisomy 18. Their website has educational information about trisomy 18, as well as decision-making aids and relevant resources for different stages of care. They also host a Facebook group and a space to share stories.