In this month’s edition, we feature the latest initiatives that GLI has taken part in to advocate for policy changes and highlight new innovations in the rare liver disease field to allow for better research opportunities and improved patient outcomes.
GLI Endorses the European Wilson’s Disease Policy Brief
We are excited to be endorsing the newly released policy brief on Wilson’s disease created by the Wilson’s Disease Policy Network. Wilson’s disease is an inherited condition that causes liver and brain damage due to copper accumulation. The policy brief stresses the need for increased awareness, access to appropriate care, and further research to better understand its impact.
ICP Care Creates New Patient Registry and Educational Resources for Intrahepatic Cholestasis of Liver Disease
GLI’s council member, ICP Care, launches a patient registry, which aims to pave the way for better treatment and management options. The registry is open to all, and can be accessed through a simple online consent form. Participants will be able to connect directly with researchers studying ICP and become part of a community dedicated to advancing the field. Registries like these are a crucial tool in the fight against rare diseases. We look forward to seeing the positive impact this registry will have on the lives of those affected by ICP.
Home Self-Administrable Device Uses Critical Flicker Frequency to Test for Hepatic Encephalopathy and More
Beacon is a handheld device that may change the way some liver diseases are detected and can even be used at home. By sending a dynamic, flickering light beam into the patient’s eye, it measures critical flicker frequency (CFF), a key indicator of liver function. Detection of CFF abnormalities can help identify liver diseases earlier, allowing for timely medical intervention and better patient outcomes. Read the full research study here.
- May 5-6, 2023 – BARE Inc. Symposium
- May 17-20, 2023 – ESPGHAN Annual Meeting
- June 22, 2023 – EASL Congress 2023
- July 13-15, 2023 – 43rd Aspen Conference on Pediatric Gastrointestinal Disease
- August 10, 2023 – Community Liver Alliance Rare Liver Disease Conference
For more information about the Pediatric and Rare Liver Diseases Council or to learn more about joining, please visit https://globalliver.org/pediatric-rare-liver-diseases-council/ or email firstname.lastname@example.org.