“Early Detection Drives Direction” for Rare Liver Diseases

The Global Liver Institute (GLI) marks Rare Liver Disease Month each February by spreading awareness of liver disease and emphasizing early detection. This year’s #RareAware campaign “Early Detection Drives Direction” highlights overlooked symptoms so that rare liver diseases may be detected sooner.

“Every patient deserves answers sooner,” said Larry R. Holden, president and CEO of GLI, in a press release. “Early detection requires more than awareness; it requires health systems, policymakers and communities working together so that once a symptom is noticed, patients receive timely care, testing and referrals. By bridging these gaps, we give hope and support to patients worldwide.”

GLI is committed to improving the lives of people living with liver disease and their families. The nonprofit promotes scientific innovation to eradicate liver disease and spread awareness of liver disease as a public health issue.

In recent years, GLI’s Rare Liver Diseases Month campaigns have focused on health care in rural communities, patient advocacy and pregnancy for people living with rare liver diseases and have included virtual empowerment meetings, expert podcast episodes, science fairs, meetings with senators and more.

In the United States, a rare disease is one that affects less than 200,000 people in the United States. On average, it takes more than six years, nearly 17 medical visits and approximately $220,000 for people with rare diseases to get a diagnosis, according to a 2023 report from EveryLife Foundation for Rare Diseases. A 2025 study in Clinical Medicine found that common symptoms of rare genetic liver disease, such as persistent fatigue, unexplained itching and abdominal discomfort, are frequently misattributed to everyday conditions like stress, allergies or general illness, contributing to delayed diagnosis and care.

Rare liver diseases, like alpha-1 antitrypsin deficiency, Wilson disease and hereditary hemochromatosis, may put people at risk for other liver diseases, including hepatocellular carcinoma, according to the American Liver Foundation.

GLI’s #RareAWARE campaign encourages people to share their stories to empower themselves and others and change the way rare liver disease is understood. The nonprofit provides a social media tool kit with ready-to-share posts, graphics and messaging to raise awareness about rare liver disease.