Transplant Support Groups

An organ transplant is a life-saving procedure that changes your life forever. Issues such as immunosuppression and follow-up care can limit your travel options and may even come into play as you make decisions about where you want to live and your own family planning. 

There are a number of transplant support groups, some of which are specific to a type of organ transplant and others of which include all organ transplants. As you think about the best group for you, it’s important to remember that your personal experience is shaped not only by the type of transplant you've had (or are waiting for) but also by factors such as your age and the reason for your transplant. 

Transplant Recipients International Organization (TRIO)

Transplant Recipients International Organization (TRIO) is an international nonprofit organization that has many local chapters. You can join as a member of the international support group or join a local chapter in your area, some of which hold in-person meetings. You can also connect with the administrators to learn about starting a chapter in your community. 

The TRIO support group focuses on transplant awareness, support, education, and advocacy. The organization serves people who are waiting for a transplant or have had a transplant. Educational content and member stories are accessible on the website. 

One of TRIO’s programs, "Lend A Helping Ear," links members who are willing to share experiences with others in need of support. There is also a subgroup dedicated to caregivers that is partnered with Transplant Caregivers - Partners for Life, a private Facebook group. 

TRIO is run by a staff of administrators.

UPMC Children’s Hospital of Pittsburgh

Childhood transplants involve lifelong considerations as children learn how to attend school and participate in activities while accommodating their health limitations. Parents also have concerns about caregiving and helping their children work towards independence and self-care. 

UPMC Children’s Hospital of Pittsburgh has a dedicated support group for children who have had or are getting an organ transplant. Educational videos and resources are available on the website. 

Summer camps for kids who have had transplants are also available, offering a complete schedule of fun activities and educational programs. 

Parents of children receiving care at UPMC can have access to sleeping rooms, showers, and laundry facilities. There is also a parent support group, and limited financial assistance for families is available.

While the UPMC support group is free to join, the children's camp requires a participation fee. 

Transplant Support Organization

The Transplant Support Organization has many objectives, including raising community awareness about organ donation and supporting organ transplant recipients with scholarships, education, and networking opportunities. Their support group serves Westchester County and the surrounding areas, while their awareness and advocacy programs have a national reach. 

In addition to education, the Transplant Support Organization actively works to sign people up to become organ donors.

The organization offers a scholarship to "honor the memory of deceased members" and promote the importance of organ, eye, and tissue donation. Each year, a high school senior in New York State is chosen from a pool of applicants to receive the scholarship based on their advocacy and awareness efforts.

Advocacy programs conducted by the Transplant Support Organization include legislative lobbying campaigns to increase research and treatment access. Additionally, the group presents educational programs at schools and community centers.

The Transplant Support Organization is staffed by volunteers and funded by membership fees and donations.

American Heart Association

Adults and children who are survivors of a heart transplant need lifelong cardiac care and continue to have persistent health concerns after transplant. The American Heart Association’s heart transplant support group is a national network of heart transplant survivors and candidates who can connect with each other for support, advice, and referrals.

The support group hosts an online collection of educational materials, including a library of articles and videos about life as a heart transplant recipient.

The community page has a dedicated space where members can post questions, comments, and replies. Topics range from general concerns about living with a heart transplant to more timely issues.

You can also join the American Heart Association's private Facebook page to connect with others who share your same concerns.

The American Heart Association support group is free to join and supported by private, corporate, and foundational donations.

Second Wind

Second Wind is a lung transplant support group that provides information about lung transplants, a community network, and a financial assistance program for lung transplant survivors and candidates. 

The website provides registered members with a search tool to find and connect with others who have undergone similar lung transplant experiences. Members listed in the Member Search can only be reached if they give consent to having their name and information published in the directory. 

Second Wind also offers financial assistance to applicants who qualify. The fund is intended to help with medical expenses and associated costs directly related to a lung transplant that are not covered by insurance. There is a limit to the amount of financial assistance a member can receive, and members of organizations that provide similar funding are ineligible. (These groups are listed on the Second Wind website.)

Second Wind is funded by membership dues and donor contributions.

National Kidney Foundation's Transplant Community

Kidney transplants are the most common type of organ transplant received from a living donor. Oftentimes, a kidney donor is a person related to the recipient. A kidney transplant is a concern for the donor and recipient, both of whom need to understand the health implications before and after the surgery. 

The National Kidney Foundation's Transplant Community is a support group for people who have had or are awaiting a kidney transplant as well as their families. The online support group offers educational material about living with a kidney transplant, an interactive discussion forum, and access to a private community to network and interact with others on a one-on-one basis. 

The Transplant Community support group is free to join and moderated by a staff of administers. The program is funded by private, corporate, and foundational donors.

American Liver Foundation's Inspire Support Group

A liver transplant is generally preceded by a lengthy bout with liver disease, during which time people often experience extreme illness and infirmity. After the transplant, there may be extreme changes in lifestyle that can be equally challenging.

The American Liver Foundation’s Inspire support group serves adults who have had or are awaiting a liver transplant. 

The support group offers networking opportunities through an active public discussion board. Topics include complications of liver disease and side effects of post-transplant medications. A private support community, available by registration, allows for more personal interactions. 

The Inspire support group also offers updated information about clinical trials, including eligibility information. There are also resources for caregivers who are impacted by the challenges of a liver transplant. 

Membership is free. The support organization is funded by charitable contributions from private, corporate, and foundational sponsors. 

Liver Families

Liver transplants are among the more common types of organ transplants in the United States. Children not only require transplants for different reasons than adults but have distinctive care needs.

Liver Families is a support group that serves children who have undergone or are awaiting a liver transplant as well as their families. The online support group is kid-friendly and intended to provide a comfortable and fun space for its members.  

The organization offers information, education, and networking opportunities for members to connect. The educational material is geared specifically toward childhood liver disease and concerns about liver transplants in children. 

A private forum is available to registered members, allowing you to share your experiences and connect with others on a one-on-one basis.

Members can also shop for items at an online store, the profits of which help fund the support group. The Liver Families support group is run by volunteers and is free to join.

Frequently Asked Questions

  • What are transplant support groups?

    Transplant support groups are non-profit organizations that provide transplant recipients or those awaiting a transplant with information, networking opportunities, education, and moderated support. Many of these groups maintain private communities for registered members. Some offer in-person support groups and special events for members to meet and share experiences and concerns. 

  • Is a transplant support group right for me?

    Living with an organ transplant can be extremely challenging, often leaving you isolated from others who understand your concerns (especially if you live in a remote or small community). You can benefit from connecting in a safe space to share experiences, information, and resources with others who have had or are awaiting an organ transplant.

  • How are transplant support groups structured?

    Non-profit support groups are usually staffed by paid administrators, while volunteers participate in various facets of the program. Private networking usually takes place in registered sites that are password protected. 

  • What do they cost?

    Most transplant support groups are free but encourage financial contributions from their members. Some fund their efforts through annual membership fees. Special events and camps are generally fee-based.

  • Do these groups accept insurance?

    Any fees associated with transplant support groups (including annual membership fees, social events, or camps) are not covered by health insurance.

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2 Sources
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  1. United Network for Organ Sharing. Living donation facts and resources from UNOS.

  2. United Network of Organ Sharers. Transplant trends.