The Edwards Syndrome Association
A community of parents and caregivers – Support and Resources
Amazing Podcast Episodes:
At the Edwards Syndrome Association, we walk beside families facing a Trisomy 18 diagnosis, offering understanding, hope, and unwavering support. Through heartfelt connections, practical resources, and uplifting stories, we remind families they are never alone on this journey. Every child’s life has meaning, and every story matters.
We’ve shared the stories of 80+ Thriving Warriors and honored the memories of more than 40 beautiful angels on our website.
Click below to learn about Trisomy 18.
Join Us for the Virtual 3.18k!
Walk, run, or roll anywhere and be part of the Edwards Syndrome Association’s mission to break barriers and bring hope.
We would love your Sponsorship! Your Sponsorship helps fund care packages, family support, and vital hospital resources while giving your business valuable visibility.
News You Need To Know....
The American Academy of Pediatrics (AAP) has just released a powerful new publication: (Click the link below)
Here are a few key highlights that deeply resonate with us:
Trisomy 18 is not inherently lethal.The idea that high mortality justifies non-intervention ignores the growing evidence: interventions can change outcomes. Withholding care based on outdated assumptions becomes a self-fulfilling prophecy.
Consistency in care matters.Children with T13 or T18 should receive individualized care no matter where they’re born or treated. Access to medical interventions should not depend on geography or institutional bias.
Heart surgeries should be considered fairly.When infants with T13 or T18 have congenital heart disease, decisions about surgery should be made using the same standards applied to any other patient, based on medical facts, not genetic diagnosis.
Evidence supports intervention.We now have data showing that interventions do work. An extra chromosome should never be used as a reason to deny a child life-saving care.
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“We applaud the AAP for affirming the worth of individuals with Trisomy 18 and urging greater research to support those living longer, fuller lives. At ESA, we are committed to championing this cause and ensuring families have the resources and support they need at every stage.”
Check out our Amazing Programs
During tough times, our NICU Package program brings comfort and inspiration to families with newborns in Neonatal Intensive Care Units (NICUs). Join our program and receive our NICU Care Package to spread kindness and hope. Submit a request via the button for your special package!
Our "Breaking Barriers" Hospital Display is designed to raise awareness about children with Edwards Syndrome (Trisomy 18) during their hospital stay. This poster is meant to help brighten your child’s day and share a message of hope with the medical team caring for them.
The ESA wanted to celebrate Edwards Syndrome warriors on their first birthday. This is the age that so many in the medical field say those with an extra 18th chromosome will not see. This makes this birthday so much more special for these kiddos.
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Join Our Community and Make a Difference
Become a member of the Edwards Syndrome Association and join our community. By joining our community, you can connect with other families affected by Edwards Syndrome and learn about their experiences. Please share your stories, feelings, and advice with our supportive community and access useful resources and information. Together, we can make a positive impact on the lives of individuals with Edwards Syndrome.
Check out our thriving Community!
Thriving Thursday is a beacon of hope and inspiration for families touched by Trisomy 18. We honor the extraordinary lives of these resilient children, who courageously overcome challenges and bring joy to all who know them. Their stories remind us that with love, strength, and support, every child has the potential to shine and make a lasting impact on the world.
Beautiful Angel Stories
We invite you to share your Angel’s journey with us. By featuring their story, we aim to spread awareness, inspire compassion, and transform how the world understands Edwards’ Syndrome. Together, we can change the narrative surrounding this diagnosis, offering hope and understanding to families everywhere. Your Angel’s life is a testament to strength and beauty, and by sharing their story, you are helping to create a legacy of love and awareness that touches hearts around the globe. Join us in celebrating their light and making a difference, one story at a time.
