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Let’s Talk Transplant

According to the Organ Procurement and Transplant Network, as of April 15, 2024, approximately 89,300 individuals in the United States are awaiting a kidney transplant. As national transplant waiting list times can often take years, many patients turn to friends, family, and sometimes even strangers, in their search for a living donor kidney transplant. Education is one of the most powerful tools when it comes to organ donation.

Learn 10 Common Misconceptions about Organ Donation and Transplantation. The Organ Procurement and Transplant Network website allows for a quick search of U.S. transplant clinics near you.

Scroll to the bottom of this page for informative resources and research regarding renal transplants.

To be connected with an individual who has successfully undergone transplant surgery, contact us

Seeking A Living Donor

Asking someone to be a living donor can be one of the most challenging conversations a potential transplant recipient will face. With input from Alport transplant recipients (and their donors), and with the guidance of transplant nephrologist Dr. Alexander Wiseman, ASF created a document outlining considerations when seeking a living kidney donor. Click the blue button below to view.

Considerations When Seeking a Living Donor Document (Coming 4/18/24)

Getting the Word Out

Those in need of a kidney often simply don’t know how to publicly ask. We’ve compiled some phrasing suggestions below to help patients craft email and social media content, which can also be modified for various other awareness mediums.

Email Phrasing Coming Soon

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Coming Soon

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Surgery Preparation

In late 2021/early 2022, a group of Alport syndrome kidney transplant recipients gathered for a series of ASF-hosted virtual meetings to discuss shared experiences and identify gaps in current care. In all, 25 patients of varying ages and backgrounds volunteered to help ASF prepare a new document outlining tips, talking points, and questions for patients to ask of their transplant teams in preparation for surgery and recovery. The document was revised in 2023 with input from additional patients


Things Transplant Patients Wish They Knew Before Surgery

Interested in becoming a living donor? This insightful Los Angeles Times op-ed explains why one individual chose to give the Gift of Life..

Meet Some Transplant Recipients

Submit your transplant story and photos to [email protected] with a note authorizing ASF to share!

Living Kidney Donor Interview: Mack

Meet Alport patient Zac, age 29, and his his living kidney donor, Mike:

Kevin and his living donor, Matthew, discuss surgery, recovery, and more:

The following resources can answer common questions patients and family members have about kidney transplantation:

Alliance for Paired Donation
Alliance for Paired Donation is one of many organizations that facilitate kidney paired donations.

Alliance affiliated centers:

American Association of Kidney Patients
This simple yet thorough explanation of the transplant process was written by transplant nurses.

American Society of Transplantation
This site is regularly updated with pertinent information for kidney transplant recipients and medical professionals.

California Pacific Medical Center
This is an outstanding resource for potential kidney transplant patients, regardless of where they plan to have a transplant.

Cleveland Clinic
Cleveland Clinic’s website provides information on transplant procedure details, risks/benefits, and recovery/outlook.

Donate Life America
Donate Life America is a not-for-profit alliance of national organizations and local coalitions across the United States dedicated to inspiring all people to save and enhance lives through organ, eye and tissue donation.

ESRD Networks
The Forum for ESRD (End-stage Renal Disease) Networks advocates for organizations that monitor the quality of CKD, dialysis, and kidney transplant care in the US.

European Dialysis and Transplant Nurses Association — European Renal Care Association
The European Dialysis and Transplant Nurses Association/European Renal Care Association (EDTNA/ERCA) was established in 1971 to address the special needs of nurses and other professionals that treat patients suffering from renal failure.

Georgetown University School of Nursing & Health Studies
The Guide to Living Donation page discusses the needs, benefits, and risks of living organ transplants, and includes a comprehensive glossary of important terms to know. It also breaks down who can become a living organ donor and the physical and psychological considerations to think about when making this commitment.

Living Kidney Donors Network
The Living Kidney Donors Network (LKDN) is a not-for-profit organization whose primary mission is to educate people who need a kidney transplant about the living donation process and to prepare them to effectively communicate their need to family members and friends. LKDN’s “Having Your Donor Find You” educational video series provides information on self-advocacy, spreading awareness, social media tips, the organ matching process, and more.

Mayo Clinic — Transplant Diagnosis  and Treatment  Information
Mayo Clinic doctors perform more than 1,100 transplants a year, making it the largest transplant program in the United States.

Medicare’s official website outlines coverage for those who receive a renal transplant.

National Foundation for Transplants
The National Foundation for Transplants is dedicated to helping patients overcome financial hurdles in receiving a life-saving transplant, and the follow up treatment and medications essential to their continued health.

National Kidney Foundation
National Kidney Foundation’s “The Big Ask, The Big Give” program provides numerous educational resources and video testimonials about living donation.

National Kidney Registry
The National Kidney Registry (NKR) finds better matches with better long-term outcomes for kidney recipients with the largest pool of living donors across 85 transplant centers in the United States.
NKR affiliated centers:

Renal Support Network
Renal Support Network (RSN) provides numerous educational resources for those living with kidney disease. Lori Hartwell, Founder and President of RSN, provides tips for those seeking a kidney transplant in this informative article.

Scientific Registry of Transplant Recipients
SRTR supports the transplant community with statistical analyses to improve patient outcomes.

Transplant Living
Transplant Living is a project of the United Network for Organ Sharing (UNOS), a nonprofit organization that maintains the national Organ Procurement and Transplantation Network (OPTN) under contract with the Health Resources and Services Administration of the U.S. Department of Health and Human Services. A Pediatric section is provided.

United Network for Organ Sharing (UNOS)
The United Network for Organ Sharing is the leader in the field of transplantation data and research whose mission is to advance organ availability and transplantation by uniting and supporting its communities for the benefit of patients through education, technology and policy development.

Renal Transplant Published Research:

De Novo Malignancies after Kidney Transplantation
Al-Adra, David et al.
CJASN, March 2021.