Pediatric Heart Transplantation:
A Practical Parent Guide

PART 10: RESOURCES AND INFORMATION

Center for Families, Children’s Hospital, Boston

Phone: 617-355-6279; www.childrenshospital.org

• Center for Families at Children’s Hospital is dedicated to helping families find information and resources they need to understand their child’s medical condition and take part in their care.

Trio

Phone: 1-800-TRIO-386; www.trioweb.org

• Nonprofit organization committed to provide support, awareness, education and advocacy to those involved with organ transplants.

National Foundation for Transplants

Phone: 1-800-489-3863; www.transplants.org

• National, nonprofit organization offers a program of healthcare and financial support services and patient advocacy for transplant candidates, recipients, and their families.

Children’s Organ Transplant Association

Phone: 1-800-366-2682; www.cota.org

• An organization that works to make life-saving organ transplants accessible to all.  COTA works with individuals of all ages to arrange the necessary funding for transplant expenses.

United Network for Organ Sharing

Phone: 1-888-TXINFO-1; www.unos.org

• A private, nonprofit membership organization that administers the National Organ Procurement and Transplant Network (OPTN) and the US Scientific Registry under contracts with the US Department of Health and Human Services.

Experience Journal

www.experiencejournal.com

• Provides narrative stories and videos of families and clinicians facing pediatric heart disease along with a hospital preparation manual entitled: Helping Your Child with a Medical Experience, A Practical Parent Guide.

American Heart Association

www.americanheart.org/children

• Offers easy to read medical information and pictures on congenital heart defects and children.

 

 

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