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Welcome to the Alagille Syndrome Alliance (ALGSA) International Registry. This registry was created to develop a comprehensive data bank of individuals with Alagille Syndrome (ALGS) to better understand its characteristics, determine areas needing further research, and develop targeted treatments to improve the lives of those affected. Everyone with ALGS, regardless of age, severity of symptoms, affected organs, place of residence, etc., is eligible to participate.

The only way to unravel the mystery of ALGS is through research. Research needs data, and that information comes from those willing to share their time, family history, and samples (tissue, blood, DNA, etc.). By joining this registry you are helping to define the diversity of ALGS among our worldwide members. Providing this information is critical to understanding the history and progression of ALGS and, ultimately, to growing the knowledge base that will build a better life for everyone with ALGS. Thank you for sharing your information so that all can benefit!

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Did you know?

Alagille Syndrome (ALGS) affects about 1 in every 35,000 people. The genetic mutation in the ALGS gene – JAG1 – causes organs in the body to develop abnormally, especially the liver, heart, kidneys and blood vessels, and there is no known cure.

The Alagille Syndrome Alliance (ALGSA) empowers families to build better lives for children and adults affected by this complex genetic disorder. We answer questions, provide information, and lend an ear as families enter the uncertain world of ALGS. We encourage families to participate in research studies and in 2013 awarded two research grants totaling $96,000 over two years. The ALGSA is proud to be among the Founding Registry Partners of the PatientCrossroads CONNECT program.