The Fatty Liver Foundation is launching its fifth annual national survey to understand how people living with steatotic liver disease (fatty liver) are experiencing care as new treatments and diagnostic tools become available. Since 2022, this patient-focused research initiative has gathered real-world insights directly from people navigating liver disease in everyday clinical settings, rather than just in research studies .

Why Does This Survey Matter for Liver Disease Patients?

As the landscape of liver care evolves with new therapies, broader use of non-invasive diagnostic tests, and increased public health attention to liver disease, the Fatty Liver Foundation recognized a critical gap: most research focuses on clinical trials and laboratory settings, not on how patients actually experience care in their doctors' offices and communities. The 2026 survey continues the foundation's commitment to keeping patient voices central to the conversation about liver health .

The survey captures experiences across the full spectrum of steatotic liver disease, including metabolic dysfunction associated steatotic liver disease (MASLD), metabolic dysfunction associated steatohepatitis (MASH), alcohol-associated liver disease (ALD), and the emerging metabolic dysfunction and alcohol-associated liver disease (MetALD) subtype .

"As new treatments, diagnostic technologies, and clinical research programs emerge, it is essential that we understand how these developments are reaching people living with steatotic liver disease," said Wayne Eskridge, Co-Founder and CEO of the Fatty Liver Foundation.

Wayne Eskridge, Co-Founder and CEO, Fatty Liver Foundation

What Specific Information Does the Survey Collect?

The confidential online survey invites adults across the United States to share their experiences in several key areas. Participants provide insights about their diagnosis journey, access to care, symptom burden, awareness of available treatment options, and overall quality of life . This data helps researchers, healthcare providers, and policy leaders understand where the healthcare system is succeeding and where it needs improvement.

• Diagnosis and Detection: How patients discover they have steatotic liver disease and whether they received timely diagnosis
• Access to Care: Whether patients can find specialists, afford treatments, and navigate the healthcare system effectively
• Treatment Awareness: What patients know about available therapies and how they learn about new options
• Quality of Life: How the disease affects daily functioning, work, relationships, and overall well-being
• Symptom Experience: What physical and emotional challenges patients face while living with liver disease

Henry E. Chang, Executive Director of the Fatty Liver Foundation, emphasized that tracking these insights year after year reveals important trends and gaps. "By gathering insights from people living with these conditions year after year, we are able to monitor trends, identify barriers, and highlight opportunities where the healthcare system can better respond to the needs of this growing community," Chang explained .

How Can Patients Participate and What Happens With the Data?

The survey is open to any adult in the United States living with steatotic liver disease. Participation is confidential and takes place through an online platform. Data gathered through the survey contributes to ongoing research, patient education initiatives, and advocacy efforts led by the Fatty Liver Foundation and its partners .

The findings also support the development of programs aimed at improving early identification of liver disease, expanding access to care, and strengthening patient support systems nationwide. This means that survey responses directly influence how the foundation and healthcare organizations approach liver disease prevention and treatment .

"Clinical trials and scientific research provide essential evidence, but understanding how care is delivered and experienced outside of research settings is equally important," noted Dr. Neeraj Mistry, Chief Medical Officer of the Fatty Liver Foundation.

Dr. Neeraj Mistry, Chief Medical Officer, Fatty Liver Foundation

One important aspect of this year's survey is its commitment to including voices historically underrepresented in liver disease research. Jenn Jones, Founder and Visionary of Sober Livers (an impact program of the Fatty Liver Foundation), emphasized that people living with alcohol-associated liver disease and those navigating recovery after liver transplant have often been left out of research conversations. "This survey provides an opportunity for every voice within the steatotic liver disease community to be heard," Jones stated .

Steatotic liver disease represents one of the fastest growing causes of chronic liver disease worldwide, making real-world patient data increasingly important as clinicians and health systems adapt to new standards of care. The Fatty Liver Foundation's annual survey bridges the gap between what happens in research settings and what actually occurs when patients seek care in their communities, ensuring that advances in science translate into meaningful improvements in people's lives.