KIDNEY patients
JBF assists patients listed for transplant at any of the 4 San Diego transplant centers: Scripps Green, Sharp Memorial, Rady Children’s, and UCSD. All requests come through referrals by transplant social workers. If you have an emergency need, please contact them. If you need help and don’t know who your social worker is, ask your transplant coordinator.
FOR THOSE INTERESTED IN A TRANSPLANT (ANY ORGAN)
It’s important—and not that hard—to collect all the information you can from reputable sites and sources. The waiting areas of your nephrology office should also have brochures. Call your local transplant center to inquire about material they have online or can send—or if you may speak with someone on their transplant team. Locate your local transplant centers at: http://optn.transplant.hrsa.gov/members/directory.asp
If it is a kidney transplant you are considering please share your mailing address on the form below and JBF will mail you an excellent guide to transplant written by Dr. Mark Wedel.
If you use the internet or can ask someone to help you, here are a number of useful sites.
links to RESOURCES*
Donate Life America: for news in the transplant community and how to get involved in the cause, there is no better site. http://www.donatelife.net/
Trio: an international non-profit organization formed to improve the quality of lives touched by transplant through support, advocacy, education, and awareness. http://www.trioweb.org/
American Kidney Fund: Full of ideas, free apps, information and can also provide assistance through referrals from dialysis social workers. www.kidneyfund.org/
American Association of Kidney Patients: a national nonprofit funded by kidney pts for kidney pts, goal is education and to improve health and wellbeing of CKD patients. www.aakp.org
National Kidney Registry: a non-profit dedicated to increasing the quality, timeliness and number of living donor transplants, significant registry of potential donors and the leader in pay-it-forward chains amplifying the value and benefit of altruistic donation. www.kidneyregistry.org
Living Kidney Donor Network: a non-profit whose aim is to share knowledge and build the confidence to enable the life changing benefits of living donation. www.lkdn.org
Renewal: dedicated to assisting people suffering from various forms of kidney disease. We are a multi-faceted proactive team that is dedicated to saving lives through kidney donation. http://www.life-renewal.org
United Network for Organ Sharing: a private non-profit that manages the USA’s organ transplant system under contract with the federal government. The NOTA (National Organ Transplant Act) of 1984 called for a private nonprofit to run the Organ Placement and Transplant Network (OPTN). Has held the contract since 1986. www.UNOS.org
UNOS list of all US transplant centers: http://optn.transplant.hrsa.gov/members/directory.asp
Kidneylink: a comprehensive resource on kidney transplantation written & reviewed by medical professionals. www.Kidneylink.org
Organ Procurement & Transplant Network: essentially the data arm for UNOS, it maintains the only national waiting list and contains very comprehensive data on transplant waiting lists and outcomes. http://optn.transplant.hrsa.gov/data/
The John Brockington Foundation: a San Diego-based non-profit whose goal is to create a culture in which organ donation is commonplace. Contains an especially inspiring and instructive video from ESPN television’s Outside the Lines. www.johnbrockingtonfoundation.org
CBS News Katie Couric video: a capsule tv summary of living donation and the domino effect from Good Samaritan donation. http://www.cbsnews.com/video/watch/?id=7042488n&tag=mncol;lst;1
Scientific Registry of Transplant Recipients: provides a profile on each US transplant center, the number of patients transplanted each year as well as their patient results. http://www.srtr.org/
List of all US transplant centers and their volumes and results.
http://www.srtr.org/csr/current/Centers/Default.aspx
United Network for Organ Sharing: a private non-profit that manages the USA’s organ transplant system under contract with the federal government. The NOTA (National Organ Transplant Act) of 1984 called for a private nonprofit to run the Organ Placement and Transplant Network (OPTN). Has held the contract since 1986. www.unos.org
Living Donation California: full of information in an easy to understand format regardless of where you live. http://livingdonationcalifornia.org
Transplant Café is a blog based support group. Transplantcafe.com
Transplant Experience is a program that can help prepare you for what's ahead regardless of the type of transplant you need. Transplantexperience.com
*compiled with the help of Dr. Mark Wedel’s "So You’re Thinking About Kidney Transplantation"
