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Patient Stories

Ages Prenatal - 24 years

The true experts on any disease are the people who live with it. All of us can learn from patient stories, as they share their experiences, their dreams, and their wisdom. Here are some patient voices that help illuminate experiences with CHDs. Are we missing your favorite book or website? Let us know! Email cnpschedulingandquestions@childrens.harvard.edu

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Patient Voices in Books

These books are written by people with heart defects. They describe their experiences as patients and as whole people growing up and living with this disease.

The titles and links on this page 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 resources.

  • Avery's Gift, by John Hoefer, Mascot Books

  • The Hearts of a Girl, by Jessica Carmel, Morgan James Publishing

  • The Open Heart Club, by Gabriel Brownstein, Public Affairs Publishing

Patient Voices Online

These websites feature the voices of children and adults living with heart defects or other chronic diseases. Their perspective and expertise can help everyone to better understand and appreciate the CHD journey.

Non-Affiliation Disclaimer

This web site, article or resource is not endorsed by, directly affiliated with, maintained, authorized, or sponsored by Boston Children Hospital. 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 of their product brand.

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