Finding Your CHD Community
Connections for parents, patients, and professionals
The global CHD community is strong, diverse, and active, and it always welcomes new faces. We encourage you to reach out and connect. Meet people who understand your experiences, and share your passions.
The CHD journey is better when we can travel it together.
Stronger together
groups for everyone in the CHD community
No matter how you are connected to congenital heart defects (CHDs), there is a place for you in this community. You can find groups for parents and patients, and for researchers, providers, and professionals.
By joining together, we can build friendships, offer support, foster collaboration, and spark innovation and research. We can't wait to learn from you, and we are so glad you are here.
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Boston Children's Hospital does not endorse any third party organization, event, product, or service described in this Community Resource Guide. All information and materials, including any links to third party sites, are provided for convenience only. Boston Children's Hospital does not control these other websites and assumes no liability or responsibility for them, including any content or services provided to you by such websites or links from such websites. Boston Children's Hospital does not make any representations or warranties with respect to any such third party information or its accuracy or completeness. All product and company names are the registered trademarks of their original owners. The use of any trade name or trademark is for identification and reference purposes only and does not imply any association with the trademark holder.
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Mended Little Hearts
Mended Little Hearts is an advocacy group that provides hope and support for children with CHD and the people who love them.
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CNOC
The Cardiac Neurodevelopmental Outcome Collaborative (CNOC) is a community of medical providers, researchers, and other professionals who are committed to understanding and improving the outcomes of people with CHDs.
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Courageous Parents Network
The Courageous Parents Network provides information, guidance, and support for anyone parent a child with a serious illness.
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Conquering CHD
Conquering CHD offers education, advocacy, and support to families affected by CHD. They have resources for parents, professionals, and young adults.
Upcoming events
activities from the global CHD community
If you want to get involved in the CHD community, this is a great place to start. We've found upcoming events that will help you to find connection, support, and information. Can't travel? Don't worry! Many of the events are virtual.
These links are provided as resources only. Boston Children's Hospital and the Benderson Family Heart Center don't necessarily endorse all of the information on these sites.
Do you know of an event? Let us know! Email CNPschedulingandquestions@childrens.harvard.edu
CNP Boston Book Club
Come read with us!
Every season, we highlight two books that help us to understand the CHD journey. We invite you to join us in reading these books, and then tell us what you think! Happy reading!
These titles are provided as resources only. Boston Children's Hospital and the Benderson Family Heart Center don't necessarily endorse all of the information in these books.
We want to hear what you think of this season's books! Email CNPschedulingandquestions@childrens.harvard.edu to tell us.
Book for Adults
Fall 2025
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Sleep: The Brazelton Way
Advice from America's favorite pediatrician
Authors: T. Berry Brazelton, MD and Joshua D. Sparrow, MD
Why we love it: CNP psychologist Dr. Samantha Butler spends much of her time in the CICU, and she knows how critical sleep is both to a baby's development, and to a family's functioning. This is her favorite sleep book.
Why parents love it
Book for Children
Fall 2025
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Oliver
Author: Birgitta Sif
Author: Tyler Feder
Why we love it: This gentle book lovingly portrays a little boy who is different from many other kids his age, and who may have an autism spectrum disorder (ASD). Children with social differences may recognize a bit of themselves in the character of Oliver, and identify with both his joys and his challenges.
Why parents love it
Learning and discovering
Doctors and scientists are constantly working to improve the lives of people with CHDs. You can help. By participating in research, you can expand knowledge about CHDs, and help move towards even better treatments.
Do you know one we didn't include? Email us at CNPschedulingandquestions@childrens.harvard.edu
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The following information is provided from ClinicalTrials.gov, which is a website and online database of clinical research studies and information about their results that is maintained by the National Library of Medicine. Each study sponsor or investigator submits information about their study to ClinicalTrials.gov and is responsible for the safety, science, and accuracy of any study they list. Boston Children's Hospital does not endorse, does not sponsor, and is not affiliated with any specific study, study sponsor, or investigator, except where explicitly noted. All product and company names are the registered trademarks of their original owners. The use of any trade name or trademark is for identification and reference purposes only and does not imply any association with the trademark holder. Patients are encouraged to discuss any research opportunities with their medical care provider before enrolling.
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Brain Characteristics, Genes, and Cognition in Adults
Boston, MA, USA. This study studies how genes and brain differences affect executive functioning in adults with d-TGA. Contact Michelle Gurvitz for more information. 617-355-6508 or michelle.gurvitz@cardio.chboston.org.
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The Genetics of CHDs
Columbus, OH, USA. This study uses whole genome sequencing to learn more about the genetic causes of CHDs, and is recruiting people with CHDs and their families. Contact Katherine Spayde for more information. 614-355-6388 or katherine.spayde@nationwidechildrens.org
SOURCE: Furthering research for single ventricle patients
Entire USA. This project is compiling the largest database of information about people living with single ventricles, and sharing this information with researchers to promote discovery and better treatments. Call (650) 561-6750 or email contact@svsource.org.
FUEL-2: Clinical trial for teens with Fontan circulation
Boston, MA; and many other sites around the USA. This clinical trial is evaluating the possible effects of a medication on exercise tolerance in teens with Fontan circulation. For more information contact Claire Wei at Claire.Wei@childrens.harvard.edu or Thomas Giorgia at Thomas.Giorgio@childrens.harvard.edu.
Addie and Sam: The Power of Connecting
Two heart families support each other
When Addie first met Sam, she was scared, and getting ready for her first open heart surgery. Though still a baby, Sam was already a CHD veteran, and his family helped assuage Addie's fears.
A decade later Addie and Sam met again, this time at a heart camp. As his counselor, Addie was able to give back to the little boy who had helped her so much.
Read their story to learn more about the power of the CHD community.
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