Resources

Transplant-Related Organizations and Websites

American Heart Association
Offers easy-to-read medical information and pictures on congenital heart defects and children.
www.americanheart.org

Children’s Organ Transplant Association
An organization that works to make lifesaving organ transplants accessible to all COTA works with individuals of all ages to arrange the necessary funding for transplant expenses. Call 1-800-366-2682.
www.cota.org

National Foundation for Transplants
National non-profit organization that offers a program of healthcare and financial support services and patient advocacy for transplant candidates, recipients and their families. Call 1-800-489-3863.
www.transplants.org

Trio
A non-profit organization committed to providing support, awareness, education and advocacy to those involved with organ transplants. Call 1-800-TRIO-386.
www.trioweb.org

United Network for Organ Sharing (UNOS)
A non-profit membership organization that manages the National Organ Procurement and Transplant Network (OPTN) and U.S. Scientific Registry under contracts with the U.S. Department of Health and Human Services. Call 1-800-TXINFO-1.
www.unos.org

World Transplant Games Federation
The organizing body of the World Transplant Games with the purpose to “visibly demonstrate the benefits of successful organ transplantation, work to increase public awareness of its success and thereby increase organ donation rates, as well as promote the full rehabilitation and wel-lbeing of our participants.”
www.wtgf.org

Adjustment and Coping Websites

Band Aids and Blackboards
Designed for children with medical challenges of all types, this site is highly interactive, with information for kids, teens and adults.
www.lehman.cuny.edu/faculty/jfleitas/bandaides/index.html

Mind Your Mind
Award-winning site for youth by youth, offering information, resources and tools to help manage stress, crisis and mental health.
www.mindyourmind.ca

Sibling Support
Support to individuals who have siblings with special needs.
www.siblingsupport.org/sibshops/index_html

Source: Pediatric Heart Transplants: A Guide for Patients and Families, Pediatric Heart Transplant Study Foundation, Children’s Cardiomyopathy Foundation