Rare Liver Diseases Month โ #RareAware
Rare Liver Diseases Month is just around the corner!
Join us next month for our annual #RareAware campaign, focusing on the theme of Transitions in Care.
During the month:
- Tune in to weekly episodes of GLI LIVE featuring patient and caregiver experiences.
- Join our empowerment day on February 17, 2023 targeted towards pediatric patients to participate in a virtual educational seminar and have the opportunity to connect with others and share their experiences. Register here.
- Be a part of the campaign and share graphics on social media using our toolkit.
- Show your support and help raise awareness about rare liver diseases by checking out our merch!
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Building the distinction between Acute-on-Chronic Liver Failure and Acute Liver Failure
The American College of Gastroenterology has released new guidelines distinguishing between acute-on-chronic liver failure and acute liver failure, aiming to ensure tailored treatment plans for each. This guideline offers a comprehensive overview of these distinct conditions, especially pertinent as novel medical therapies emerge. For an in-depth insight into the guideline’s creation and breakdown, find information from this interview with Dr. Lafaine Grant, MD.
CRISPR Gene-Editing Therapies on the Horizon
In December, the FDA granted approval to gene-editing technology for treating sickle cell anemia โ a landmark achievement in medical innovation. This development opens the door to potential advancements in various gene therapies awaiting future approvals. Progress has already been made in gene therapy for Crigler-Najjar syndrome, with demonstrated efficacy in patients. Looking ahead, Intellia Therapeutics is at the forefront of pioneering gene therapies for rare liver diseases, including transthyretin amyloidosis, currently in early clinical stages.
Intrahepatic Cholestasis of Pregnancy Cases on the Rise
Recent findings indicate a surge in intrahepatic cholestasis of pregnancy among mothers aged 35 and above. While cholestasis during pregnancy has historically impacted approximately 3 percent of the population, the current prevalence is notably higher. Screening for liver functions during pregnancy is now advised, particularly for those at risk of liver conditions. For individuals dealing with ICP, resources can be accessed through our website and our collaborative partners at ICP Care.
Global Liver Institute releases second edition of the Global State of Liver Health report
Explore global perspectives on the factors and care that affect liver disease in our latest edition of The Global State of Liver Health report! Leading experts share insights into best practices and challenges, providing a comprehensive view of liver health worldwide. Discover where local experts advocate for change and the strategies that have proven successful.
Upcoming Events
- January 27, 2024 โ Childrenโs Hospital of LA Liver Disease in Children: From London to LA Conference
- February โ Rare Liver Diseases Month, #RareAware Campaign
- February 25 – 28, 2024 โ Everylife Foundation Rare Disease Week on Capitol Hill
- February 29, 2024 โ Rare Disease Day at NIH
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For more information about the Pediatric and Rare Liver Diseases Council or to learn more about joining, please visit our webpage or email pedsrare@globalliver.org.
