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10 hours ago4 min read

Transplant Families 2024: A Year of Progress and Hope



Just like the seedling pictured above rising up against all odds, 2024 marked another fantastic year for Transplant Families. We are an organization dedicated to supporting and empowering individuals and families impacted by organ transplantation. Transplant Families continued to make a profound impact on the transplant community with your voices and your help.


Advocacy and Policy Change

One of the core pillars of Transplant Families' work is advocacy. In 2024, the organization remained steadfast in its efforts to advocate for policies that improve access to transplantation, reduce wait times, and enhance the overall quality of life for transplant recipients. Key advocacy initiatives included:

  • Pediatric Transplant Advocacy: Transplant Families continued to champion the needs of pediatric transplant recipients, advocating for timely access to life-saving transplants and specialized post-transplant care. Notably, several of our members have volunteered their time and expertise by serving on the boards and committees of prestigious transplant organizations, including the Organ Procurement Transplant Network (OPTN) Board of Directors, Scientific Registry of Transplant Recipients (SRTR), American Society of Transplantation (AST), and others. Their dedication strengthens our voice and ensures the pediatric perspective is represented in critical decision-making.

  • Expanded Access to Transplantation: The organization actively supported efforts to expand access to transplantation for individuals with rare diseases and complex medical conditions. Transplant Families served as co-signers on both the Charlotte Woodward Act and the FAA reauthorization bill.

    • The Charlotte Woodward Organ Transplant Discrimination Prevention Act is a proposed piece of legislation that aims to prohibit discrimination against individuals with disabilities in the organ transplant system. It is named after Charlotte Woodward, an adult with Down syndrome who received a life-saving heart transplant and has been a vocal advocate for individuals with disabilities.

    • The FAA Reauthorization Act, includes a provision to improve the safety and efficiency of the transportation of donor organs through the nation’s commercial aviation system. Transplant Families actively advocated for these pro-donation measures.

    • The Securing Growth and Robust Leadership in American Aviation Act requires the Department of Transportation (DOT), in consultation with the FAA, to convene a working group to develop best practices for transporting organs in the cabin of a commercial aircraft. The working group will include organ procurement organizations, transplant hospitals, commercial airlines, flight attendants and other federal agencies. DOT is required to convene the working group no later than 90 days after the bill is enacted. No later than one year after convening, the working group must present recommendations to the secretary of DOT. Transplant Families is proud to have many of our members on this working group.

  • Improving Patient Outcomes: Transplant Families is deeply invested in improving long term patient outcomes after transplantation. Beyond advocating for better access and care, the organization is actively involved in a PCORI grant and collaborates with several pediatric transplant learning networks. These initiatives place the patient voice at the forefront, ensuring the best of clinical care and knowledge is translated into practical resources accessible to all.


Education and Support

Education and support remain central to Transplant Families' mission. In 2024, the organization provided a wealth of resources and services to help individuals and families navigate the complexities of transplantation. Key initiatives included:

  • Educational Resources: Transplant Families offered a wide range of educational resources, including webinars, workshops, and online materials. Notably in 2024, we produced informative guides on "Understanding Transplant Labs" for Kidneys, Hearts, and Livers. These resources help patients and families become active participants in their healthcare journey.

  • Support Groups: The organization facilitated online and in-person support groups, providing a safe and supportive space for individuals and families to connect with others who understand their unique experiences.

  • Caregiver Support: Recognizing the significant role of caregivers, Transplant Families offered specific support programs and resources, including our Caregiver Connect programs. Caregivers can register for support and connect with others any time under the following link: (https://bit.ly/TFCares).


Community Building and Empowerment

Transplant Families fostered a vibrant and supportive community through various initiatives:

By advocating for policy change, providing education and support, and fostering a strong community, Transplant Families has empowered countless individuals and families to thrive after transplantation. We want to amplify YOUR VOICE as caregiver and patients. As the organization continues to evolve, it remains committed to its mission of improving the lives of transplant recipients and their loved ones. Thank YOU for making that mission possible.

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