February is Rare Liver Diseases Month!
Washington, D.C., Feb. 01, 2025 (GLOBE NEWSWIRE) — As rural healthcare access shrinks across the United States and remains limited worldwide, Global Liver Institute (GLI) is shining a spotlight on the critical need for awareness and education about rare liver diseases during Rare Liver Diseases Month. Through its annual #RareAware campaign, the patient advocacy organization is calling for more open conversations about these conditions in rural areas, where patients often face life-threatening delays in diagnosis and treatment due to a shortage of healthcare resources, specialists, and education.
With over 190 rural hospitals closed in the US since 2005 and 700 more at risk, timely medical care is increasingly scarce. Studies from around the globe have shown that biliary atresia and other genetic conditions are not only more prevalent but are often diagnosed later in rural populations due to the lack of specialized care. GLI’s campaign seeks to tackle these disparities head-on by bringing rare liver diseases into the spotlight and encouraging conversations online and in communities that could lead to earlier diagnoses and, ultimately, save lives.
Larry R. Holden, CEO of GLI, emphasized the importance of awareness: “Normalizing conversations about rare liver diseases is key to breaking barriers to diagnosis, especially in rural areas where healthcare resources are scarce. By increasing awareness, we can bridge critical gaps in diagnosis and care, particularly in underserved rural areas, and empower individuals and communities to act early.”
Rare liver diseases are not always on the radar in rural communities, and often, the symptoms are overlooked or misdiagnosed. Since they are affiliated with major academic institutions, the NORD Rare Disease Centers of Excellence are concentrated in urban and suburban parts of the country. Studies indicate that rural healthcare providers are less equipped to manage these complex conditions due to inadequate access to specialists and insufficient training. With more than 90% of rural counties in the U.S. experiencing shortages of primary care physicians (let alone rare disease specialists), addressing these challenges has never been more urgent.
“My own experience as a patient in a rural area taught me how vital it is to share our stories and raise awareness. In rural and underserved areas, people listen to those who sound like them, live near them, or share similar experiences,” said Kristin Hatcher, GLI’s Program Director of Pediatric and Rare Liver Disease and rare liver disease patient advocate. “When rare liver diseases become part of everyday conversations, especially among friends, family, and neighbors, it creates a ripple effect. It can truly make the difference between life and death.”
To address this critical need, GLI will host in-person events throughout February, such as Rare and Rural Science Fairs and Clinical and Research Roundtables at rural medical schools to educate healthcare providers and the public about the unique challenges faced. GLI is also expanding its voice through its annual #RareAware campaign featuring patient and clinician stories and is partnering with groups alongside the EveryLife Foundation to advocate for policies that improve access to specialized care in underserved areas.
GLI urges everyone to join the conversation this month — whether through social media, local discussions, or educational resources. Everyone can be involved in the vital work of raising awareness for early recognition and bridging gaps in care, especially where specialists are scarce.
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About Global Liver Institute
Global Liver Institute (GLI) is a 501(c)3 nonprofit organization founded in the belief that liver health must take its place on the global public health agenda commensurate with the prevalence and impact of liver illness. GLI promotes innovation, encourages collaboration, and supports the scaling of optimal approaches to help eradicate liver diseases. Operating globally, GLI is committed to solving the problems that matter to liver patients and equipping advocates to improve the lives of individuals and families impacted by liver disease. GLI holds Platinum Transparency with Candid/GuideStar, is a member of the National Health Council, and serves as a Healthy People 2030 Champion. Follow GLI on Facebook, Instagram, LinkedIn, and YouTube or visit www.globalliver.org. GLI is the host of Global Fatty Liver Day.
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CONTACT: Christine Maalouf Global Liver Institute cmaalouf@globalliver.org
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