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 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 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.
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.
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.
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.
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.
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 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.
