Transplants.org launches as transplant patient navigation platform
Transplants.org, a newly formed 501(c)(3) nonprofit, has launched a centralised digital platform designed to guide organ and stem cell transplant patients through what it describes as a fragmented and difficult-to-navigate care landscape. The platform draws on educational materials and outcomes data contributed by more than 25 US transplant centres, including Johns Hopkins Medicine, Stanford Medicine, and Duke Health.
The organisation was co-founded by Tristan Mace, who received an emergency heart transplant in 2021, and his wife Jordan Mace. After his procedure, the couple developed Valeos, a data research collaborative that now serves as the platform's back-end infrastructure arm. Their direct experience of the transplant system informed the platform's design philosophy: making clinically vetted information accessible at every stage of the transplant journey rather than relying on dense physical handbooks.
The gap in transplant education
A systematic review conducted in collaboration with Carnegie Mellon University and Oracle — described by Transplants.org as the largest of its kind — examined more than 100 patient education handbooks from 23 US transplant centres, covering 80% of the country's 20 largest programmes. The review identified significant inconsistency and complexity in how transplant information is presented to patients and caregivers.
Against that backdrop, the scale of need is considerable. More than 103,000 people in the United States are currently on transplant waiting lists. In 2024, over 49,000 organ transplants were performed nationally, alongside more than 23,000 blood stem cell transplants in 2023, according to federal figures cited by the organisation.
The platform uses AI-enabled data structuring to organise more than 10,000 pages of research-based educational materials into a searchable, navigable format. Users can access structured content across the full transplant lifecycle, search and compare transplant centres, and review centre profiles including volume and outcomes data. Coverage spans solid organ transplants — kidney, liver, heart, and lung — as well as autologous and allogeneic stem cell transplants.
Dr Kelly Schlendorf, Medical Director of Adult Heart Transplant at Vanderbilt University Medical Center and a member of the Transplants.org Medical Advisory Committee, said the platform "promises to be a trusted nonprofit resource empowering patients and families through a lifelong transplant journey."
Market context and regulatory landscape
The transplant information space has historically lacked a single authoritative patient-facing resource analogous to the American Cancer Society in oncology — a gap Transplants.org is explicitly positioning itself to fill. Several commercial and nonprofit patient-advocacy groups operate in adjacent areas, including disease-specific foundations focused on kidney and liver conditions, but none has sought to cover the full transplant ecosystem across organ types and stem cell procedures simultaneously.
The platform's governance model — with board and advisory committee members drawn from Mayo Clinic, Cleveland Clinic, UCLA Health, and former officials of the US Department of Health and Human Services — is designed to establish clinical credibility and independence. Lung Bioengineering Inc., a subsidiary of United Therapeutics Corporation, is named as a founding corporate sponsor, a relationship that may draw scrutiny given United Therapeutics' commercial interests in lung transplantation technology.
The organisation plans to extend its platform to prospective and living donors as it scales, which would bring it closer to policy-sensitive territory around organ procurement and allocation — areas under active regulatory and legislative scrutiny in the United States.