Resources

Support Groups

Pediatric Transplant Parent Support

The Johns Hopkins Children’s Center pediatric transplant service offers support through social workers dedicated to pediatric transplant.  The Johns Hopkins Comprehensive Transplant Center, which includes both pediatrics and adults, provides continuing education by presenting a speaker approximately every other month.  Some topics of interest include medical advances in transplantation, medications, FDA drug approval, nutrition and donor awareness.  A quarterly newsletter, Bridges, is distributed to all pediatric and adult  transplant families announcing upcoming events, committee activities as well as providing useful medical information.  Parents are invited to participate on any level, by attending a meeting and/or a social event.  

For more information please call your transplant social worker or link to the current transplant events calendar here.

Organizations and Foundations

Cystic Fibrosis Foundation
6931 Arlington Road
Bethesda, MD 21814
(301) 951-4422
(800) FIGHT CF
E-mail: info@cff.org

Second Wind Lung Transplant Association, Inc.
300 South Duncan Avenue, Suite 227
Clearwater, Florida 33755-6457
Phone (888) 222-2690
E-mail: secondwind@xtalwind.net

Transplant Recipient International Organization (TRIO)
TRIO is an international support group for transplant patients and their families.
1000 16th Street, N.W.
Washington, DC 20036
(800) TRIO-386 or (202) 293-0980

TRIO National Capital Area Chapter
P.O. Box 7633
Arlington, VA 22207
(703) 920-TRIO

United Network for Organ Sharing (UNOS)
P.O. Box 13770
Richmond, VA 23225-8700
(800) 292-9548

U.S. Dept. of Health and Human Services (HHS)
Division of Transplantation
(301) 443-7577

Books and Newsletters

Bridges, The patient newsletter of the Johns Hopkins Comprehensive Transplant Center.  Bridges aims to provide support for patients and their caretakers, to connect the CTC to its transplant family, and to inform patients about news within the transplant community. 

Transplant News, TRIO, P.O. Box 7633, Arlington, VA 22207

Internet Resources

American Lung Association
http://www.lungusa.org

American Society of Transplant Physicians
http://www.a-s-t.org

Cystic Fibrosis Foundation
http://www.cff.org

Children’s Organ Transplant Association (COTA)
http://www.cota.org

Department of Heath and Human Services
http://www.organdonor.gov

International Society of Heart and Lung Transplantation
http://www.ishlt.org

Johns Hopkins Comprehensive Transplant Center (CTC)
http://www.hopkinsmedicine.org/transplant/

Johns Hopkins Pediatric Transplant Parents Association (JHHPTPA)http://members.aol.com/JHHPTPA

Second Wind Lung Transplant Association
http://www.2ndwind.org

TransWeb
http://www.transweb.org

United Network for Organ Sharing
http://www.unos.org