Understanding The United Network For Organ Sharing

What is UNOS and what do they do?

Many patients have heard of the United Network for Organ Sharing (UNOS), but don’t know what they do. UNOS is a private, non-profit organization that runs the nation’s transplant system – known as the Organ Procurement and Transplantation Network (OPTN) – under contract with the federal government.

UNOS is involved in many aspects of the organ transplant and donation process:

  • Managing the national transplant waiting list, matching donors to recipients 24 hours a day, 365 days a year.
  • Maintaining the database that contains organ transplant data for every transplant that occurs in the U.S.
  • Bringing together the transplant community to develop policies that make the best use of the limited supply of organs and give all patients a fair chance at receiving the organ they need, regardless of age, sex, ethnicity, religion, lifestyle or financial/social status.
  • Monitoring every organ match to ensure organ allocation policies are followed.
  • Educating transplant professionals about their important role in the donation and transplant processes.
  • Educating the public about the importance of organ donation.

Assistance for patients, family members and friends

Toll-free patient services line – (888) 894-6361- UNOS offers this toll-free line to help transplant candidates, recipients, living donors, and family members/friends understand donation and transplantation policies and data. Many of the other resources listed in this article are available in print and may be requested by calling this number or filling out the contact form at http:// transplantliving.org/community/contact-us/. Questions about your health or treatment should be directed to your physician or transplant center. The line is staffed Monday through Friday, 8 a.m. to 4 p.m. ET. You may leave a message after hours and on weekends or holidays.

UNOS’ patient websiteTransplantLiving.org – UNOS provides this website as a one-stop, trusted information source for transplant candidates/recipients and their families. Learn about organ allocation, getting listed, and financing your transplant in the Before the Transplant section. Find support groups and resources under Community. Learn how to take care of your transplanted organ in “After the Transplant”. There are also sections for “Pediatric and Living Donation.”

FAQs about Kidney Transplant Evaluation and Listing - This new brochure addresses common questions potential kidney transplant candidates have about the process for seeking a kidney transplant evaluation and listing. www.unos.org/wp-content/uploads/unos/ Kidney_Eval_Brochure.pdf

Questions and Answers about Kidney Allocation – This brochure explains how kidneys from deceased donors are matched with patients on the waiting list in the United States.www.unos.org/wp-content/uploads/unos/Kidney_Eval_ Brochure.pdf

What Every Patient Needs to Know – This 36-page booklet provides information on the transplant network, preparing for your transplant, living donation, developing a financial plan, life after transplant and promoting donation. www.unos.org/wp-content/ uploads/unos/WEPNTK.pdf

Living donation: Information you need to know – This brochure covers the types of living donation, the process, and considerations for making an informed decision.https://www.unos.org/wp-content/ uploads/unos/Living_Donation.pdf

I have a living donor who doesn’t match, what can I do? Read this brochure to learn about kidney paired donation and the OPTN Paired Kidney Donation Pilot Program.

Advice for contacting your donor family – Many transplant recipients have questions about contacting their donor family. Learn about the process and get suggestions athttp://transplantliving.org/community/patient-resources/contacting-your-donor-family/

Find a transplant center – Locate transplants centers by state and the type of organ needed or run a list of all transplant centers in the United States athttp://optn.transplant.hrsa.gov/converge/members/search.asp

Data - When choosing a transplant center, you may want to compare the number of transplants performed, waiting list size and survival rates at the centers you are considering. Go tohttp://optn.transplant.hrsa.gov/converge/latestData/stateData.asp?type=center for the number of transplants and waiting list size by transplant center. Visit www.srtr.org for median wait time and survival rates by transplant center.

 

How Can I Get Involved?

  • You have a voice in shaping organ transplant policy. The OPTN policy development process incorporates feedback on policy and bylaws proposals, before the proposals go to the OPTN board of directors for approval. Public comment is an essential part of the policy development process. To encourage public participation and promote transparency, comments are published on the web. Voice your opinion athttp://optn.transplant.hrsa.gov/governance/public-comment/
  • Help spread the word about organ donation – There are 58 organ procurement organizations in the United States. Each one has a designated service area in which they promote organ, eye and tissue donation. They all rely on volunteers to tell their stories and help staff events. Find your OPO using our member directory at http://optn. transplant.hrsa.gov/converge/members/search.asp