(Washington, D.C., February 1, 2021) – Global Liver Institute (GLI), in their mission to improve the lives of individuals and families impacted by liver disease, has announced February 2021 as the first annual Rare Liver Diseases Month. This year’s inaugural campaign, themed #RareAware, will feature communication, education, and advocacy efforts focused on rare liver diseases throughout February.
There are over 100 liver diseases, yet most liver diseases are often overshadowed by more common liver diseases such as alcoholic hepatitis, viral hepatitis, and non-alcoholic fatty liver disease (NAFLD)/non-alcoholic steatohepatitis (NASH) due to their prevalence. Successful research and treatment development for pediatric and rare diseases lags far behind research and treatment development for common diseases. However, innovative regulatory and financing/reimbursement models along with the maturation of the rare disease patient space are driving investment, data collection/sharing, and clinical collaborations. These developments provide a great deal of optimism and a strong foundation for growth.
GLI is launching the #RareAware campaign to support patients and families affected by rare liver diseases, using multiple platforms to amplify the patient’s voice. The campaign name #RareAware highlights the need for awareness of rare liver diseases. With Rare Liver Diseases Month and the #RareAware campaign, GLI aims to shine a light on these terrible diseases, raising awareness, and illuminating the need for policies and research that support rare liver patients.
GLI’s President and CEO, Donna Cryer, JD, knows firsthand what it means to face the challenges of being diagnosed and living with a rare liver disease. “As someone who has lived with an autoimmune liver disease for over 30 years, and convener of the largest alliance of organizations devoted to addressing the challenges of pediatric and rare liver disease patients, I am elated to announce an annual month-long campaign to bring awareness to the issue of rare liver diseases. We are committed to energetically and creatively addressing the needs of rare liver patients and their families,” said Mrs. Cryer.
Through the #RareAware campaign, GLI will share social media messages throughout the month that include information about rare liver diseases, resources for patients, and more, including a #RareAware Advocate Toolkit. In addition, in honor of Rare Liver Diseases Month, GLI’s weekly online virtual event, GLI LIVE, hosted by Mrs. Cryer, airing live on Facebook, YouTube, and Periscope every Wednesday at 12pm EST, will focus on rare liver diseases. Throughout the month of February, Mrs. Cryer will engage in enlightening and informative conversations with patients and physicians to elevate the patient voice, shed light on some of the challenges that rare liver patients and families face, and provide awareness and education of various rare liver diseases.
Nicole Wells, GLI’s Pediatric and Rare Program Manager and a rare liver disease patient, also understands the urgent need for awareness. Ms. Wells said, “We invite everyone to join us virtually in conversation on rare liver diseases. Even if someone is not a liver patient or caregiver, I encourage you to utilize the #RareAware advocate toolkit, which can be found on GLI’s website, to support rare liver disease patients.”
Visit the GLI website to learn more about GLI’s liver health advocacy initiatives.
About Global Liver Institute
Global Liver Institute (GLI) is a 501(c)(3) tax-exempt not-for-profit organization, headquartered in Washington, D.C., United States, with offices in the U.S. and Europe. GLI’s vision is for liver health to take its place on the global public health agenda commensurate with its prevalence and impact. GLI’s mission is to improve the lives of individuals and families impacted by liver disease through promoting innovation, encouraging collaboration, and supporting the scaling of optimal approaches to help eradicate liver diseases. Follow us on Twitter, Facebook, Instagram, and LinkedIn.