Washington, D.C., Feb. 01, 2026 (GLOBE NEWSWIRE) -- Rare disease patients often have to make 17 medical visits before a diagnosis. Under the theme of Early Detection Drives Direction, Global Liver Institute’s annual #RareAware campaign challenges health systems, policymakers, and communities to recognize rare liver diseases sooner, before missed symptoms determine outcomes.
Rare liver diseases affect a small percentage of the population, yet their symptoms are often nonspecific. Common symptoms like persistent fatigue, unexplained itching, and abdominal discomfort are frequently misattributed to everyday conditions like stress, allergies, or general illness, which contributes to delayed diagnosis and care.
These challenges in diagnosing rare liver diseases underscore the need for early detection and align with a period of significant policy and regulatory change. In 2025, the U.S. Food and Drug Administration introduced the Rare Disease Evidence Principles, enabling more flexible evidence standards and earlier access for rare disease therapies. Globally, major investments and policies have taken effect, such as the European Union’s SCREEN4CARE initiative which aims to expand newborn genetic testing and China’s expansion of its national rare disease list and reimbursement pathways, reducing the financial barriers to testing and treatment. As health systems evolve, ensuring rare liver diseases are acknowledged and recognized within these efforts is critical.
“Every patient deserves answers sooner”, shares Larry R. Holden, President and CEO of Global Liver Institute. “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.”
This #RareAware campaign empowers patients, families, and healthcare providers to share information, raise awareness, and act on early warning signs. GLI’s social media toolkit provides ready to use messaging and graphics to start conversations. GLI is also engaging in federal advocacy efforts, participating in Everylife Foundation’s Rare Disease Week activities and ensuring that rare liver diseases have a seat at the policy table.
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 NORD, and serves as a Healthy People 2030 Champion. Follow GLI on Facebook, Instagram, LinkedIn, and YouTube or visit www.globalliver.org.
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Christine Maalouf Global Liver Institute cmaalouf@globalliver.org
