Alagille Syndrome (ALGS) is very rare. About 8,000 individuals in the United States have it and it is a devastating disease affecting most of the major organ systems in the body to varying degrees. In 1990, Cindy Luxhoj Hahn’s daughter was born with ALGS. After finding that there was no information about and no support for individuals with this disease, she became frustrated and, in 1993, created the Alagille Syndrome Alliance (ALGSA).
We started with two families and a one-page newsletter. Costs were out-of-pocket. Today, the ALGSA is a 501(c)(3) public charity, has a Board of Directors and Medical Advisory Board, a quarterly newsletter and web site that reach over 600 families, and worldwide recognition. The Alliance provides a vital link between families and offers them the help they need to help their children live longer and healthier lives.
Recently, a family came across the ALGSA web site. They have four children, three of whom had different problems for years that no one could identify. They recognized the symptoms and came to the family conference offered by the ALGSA every three years. Through individual consultation with a doctor there, they confirmed that three of the children have ALGS – and later found out that the father has it as well and had gone undiagnosed his entire life. Now the family knows what they are dealing with and what to do about it. They hosted a family gathering in their area to spread the word and support to other families. We hope to reach all people affected by ALGS to let them know they are not alone.