Best Transplant Support Groups

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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. 

The 8 Best Transplant Support Groups of 2021

Best Overall : Transplant Recipients International Organization (TRIO)

Transplant Recipient International Organization (TRIO)

Transplant Recipient 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 meetings in person. You can also connect with the administrators to learn about starting a local 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. 

Transplant awareness is focused on providing information to people who want to learn more about what it means to be an organ transplant donor and how to become one. 

TRIO is run by a staff of administrators.

Best for Children : UPMC Children’s Hospital of Pittsburgh

UPMC Children’s Hospital of Pittsburgh

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. 

Family resources are available for the parents whose children are receiving care at UPMC. These include access to sleeping rooms, showers, and laundry facilities. There is also a parent support group so that families can connect with others who understand the challenges of an organ transplant. Limited financial assistance is also available to families.

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

Best for Advocacy : Transplant Support Organization

Transplant Support Organization

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.

Best for Heart Transplant : American Heart Association

American Heart Association

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. As a registered member or caregiver, you can call a community moderator during business hours for advice and referrals.

Best for Lung Transplant : Second Wind

Second Wind

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.

Best for Kidney Transplant : National Kidney Foundation's Transplant Community

National Kidney Foundation logo

National Kidney Foundation logo

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.

Best for Liver Transplant : American Liver Foundation's Inspire Support Group

American Liver Foundation

American Liver Foundation

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 also 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. 

Best for Children With Liver Transplants : Liver Families

Liver Families logo

Liver Families logo

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.


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.

If you have already had a transplant and want to support others in need, a support group can be a great place to become a mentor and community advocate. 

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.

How We Chose the Transplant Support Groups

There are many general transplant support groups as well as specific groups for every type of organ transplant. We selected the best in their categories based on their objective approach, range of services, accessibility, and positive reviews from hospitals and patients.

For example, we chose the TRIO because it offers in-person and online groups, the American Liver Foundation’s Inspire support group because of its assistance with clinical trials, and Liver Families because of its tailored approach to children's’ needs. 

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2 Sources
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  1. United Network for Organ Sharing. Living donation facts and resources from UNOS. Updated February 24, 2021.

  2. United Network of Organ Sharers. Transplant trends. Updated January 17, 2021