In February 2017 the 8th Annual Rare Disease Day Symposium at Sanford Burnham Prebys Medical Discovery Institute (SBP) in La Jolla, California, USA, hosted Alagille Syndrome — New Research, New Hope, a scientific meeting focused on this rare and complex disease. Expert talks at the 2017 Meeting provided particular emphasis on biliary paucity, genetic mechanism, Notch signaling and biliary development/regeneration. Scientists, clinicians, advocates, patients and their families joined experts in the ALGS field to foster new perspectives, ideas, and collaborations and accelerate efforts toward a cure for Alagille Syndrome.

Information about this landmark event, including videos of some of the speaker presentations, is available on the SBP website. Click HERE. An excellent series of articles about the event, Dr. Duc Dong who organized it, and ALGSA Executive Director and Founder Cindy Luxhoj and her daughter Alaina Hahn was published in the SBP Pathways magazine Summer 2017 issue. Click HERE. The ALGSA is thankful to Dr. Duc Dong for his ongoing research in ALGS and for convening this inaugural scientific conference focusing specifically on Alagille Syndrome.


“Mobilizing resources, facilitating connections, promoting unity, and advocating for a cure to inspire, empower, and enrich the lives of people affected by Alagille Syndrome.”