The Alagille Syndrome Alliance is an international support and advocacy network for people with ALGS and their families. Founded in 1993, the Alliance has grown to include several hundred families located all over the world.
The Alliance is run by a volunteer Board of Directors composed of dedicated, committed individuals whose lives have been touched by ALGS: young people and adults with this disorder, and siblings, parents, grandparents, aunts, and uncles of children and adults dealing with the challenges of ALGS as they do their best to live a “normal” life with chronic illness.
We endeavor to provide a forum for ALGS families to meet one another on a regular basis for mutual support and sharing of current information on ALGS. We strive to include as many families as possible in Alliance programs and services so that all may benefit. We are dedicated to increasing public awareness of ALGS. We gather and distribute information about ALGS, research studies, and helpful services to families, friends, and health care providers. We recognize the wealth of knowledge that is gained through research and encourage ALGS families to participate in studies so that they may contribute to the growing information base about this disease.
Most importantly, we exist to support ALGS families and celebrate the ALGS Community. We are here to answer questions, provide sound information, and lend a sympathetic ear as families enter the world of ALGS and the challenges it presents throughout one’s life.
The purpose of the Alliance is to be the main networking resource and source of information for people with ALGS, their families, friends, and health care providers. The Alliance is also dedicated to increasing public awareness of ALGS and supporting rese
The largest gathering of ALGS families and patients in the world. We spend the weekend sharing stories, offering/receiving support and forming lifelong friendships....
Join ALGS families and ALGS specialists from the Children's Hospital of Philadelphia for an afternoon of fun, food and friendly conversation! For more information,...