Patient advocates sought for Fatty Liver Foundation’s hands-on fellowships
FLF program trains patients, caregivers as partners in research, care
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The Fatty Liver Foundation (FLF) is seeking applicants for a first-of-its-kind program that trains patient advocates to become “equal partners” in shaping research, care, and policy for metabolic dysfunction-associated steatohepatitis (MASH), a severe form of steatotic liver disease (SLD).
To be eligible for the program, called the Dr. Stephen A. Harrison Patient Advocacy Fellowship, applicants must have lived experience with MASH or another form of SLD, either as a patient or caregiver, or bring a background in patient advocacy related to liver disease or another chronic health condition.
The fellowships aim to “empower patient advocates with clinical trials literacy and policy knowledge,” according to the program’s webpage, which states that the overarching program goal is to “bridge the gap between patients, researchers, and industry leaders.”
Information on how to apply for the program, now in its second year, is available on the FLF website. The deadline for submitting applications is June 22.
“The first year of the Fellowship clearly demonstrated the need for well-trained patient advocates in MASH and broader SLD research and highlighted the potential of sustained collaboration between research teams and patient advocates,” Henry E. Chang, executive director of FLF, said in a foundation press release announcing year two.
“This level of partnership is critical to moving research forward,” Chang said.
The fellowships are named in honor of the late Stephen A. Harrison, MD, who made significant contributions to MASH research and treatment while championing the value of including patient voices in both clinical care and scientific research.
“Dr. Harrison never saw patients as passive participants in care — he treated them as partners in the pursuit of progress,” Chang stated on the webpage. “This Fellowship is grounded in that same spirit. It’s about carrying forward his values by building and supporting a new generation of liver patient advocates who will help shape the future of research, policy, and care.”
Program training patient advocates now in second year
MASH is an advanced form of SLD, a group of conditions characterized by fat buildup in the liver. This disease type is marked by liver inflammation and scarring, or fibrosis, which can lead to cirrhosis, or permanent fibrosis, and, in some cases, liver failure or liver cancer. MASH is closely linked to metabolic risk factors such as obesity, type 2 diabetes, and high levels of fatty molecules in the blood.
Despite significant advancements in MASH research, patients have largely remained on the sidelines of clinical trial design and regulatory decision-making, according to the FLF, often lacking the training and access needed to engage meaningfully.
The fellowship program was created to address this gap by providing patient advocates with knowledge of clinical trials and health policy, promoting connections among those living with the disease, researchers, and industry leaders, and supporting their attendance at conferences. The program also aims to ensure that treatments reflect the real-world experiences of people with MASH and other forms of SLDs.
It’s been empowering to contribute alongside researchers and clinicians, representing the patient community, to help shape clinical trials and advance more patient-centered care.
The FLF says the inaugural group of fellows has already made a mark, contributing to multistakeholder discussions and engaging with leading researchers, regulators, and industry partners. The fellows are described as an emerging expert group in patient-centered research on liver disease.
“The Fellowship has strengthened my confidence and understanding of how collaborative research works, where patients are recognized as partners,” said Gabriela Portugal-Bouza, MD, one inaugural fellow, who lives in Utah.
“It’s been empowering to contribute alongside researchers and clinicians, representing the patient community, to help shape clinical trials and advance more patient-centered care,” Portugal-Bouza added.
As many as 20 fellows will be selected for the second year of the program. While the program is primarily U.S.-focused, it also welcomes applicants from Canada, the U.K., and the European Union. Those selected will receive extensive training, mentorship, and financial support to participate in major scientific meetings.
“This Fellowship continues to demonstrate what is possible when patient advocates are engaged not as participants, but as partners,” said Wayne Eskridge, founder and CEO of the FLF.
The program is supported by Madrigal Pharmaceuticals, its founding sponsor and the maker of Rezdiffra (resmetirom), an oral therapy approved in the U.S., as well as in EU and the U.K., for certain adults with MASH.
