The Alagille Syndrome Alliance was founded in 1993 as a support group for individuals and families with Alagille Syndrome (AGS), a rare multi-symptom genetic disorder. Today the Alliance serves over 500 families worldwide. We are growing, striving to extend our reach to more families, educate more health professionals, and participate in research initiatives, and tirelessly working to build a better life for everyone living with the challenges of AGS. Our mission is to be the main networking resource and source of information for people with AGS, their families, friends, and health care providers. We are also dedicated to increasing public awareness of AGS and supporting research efforts on behalf of the AGS Community.
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My name is Cindy Luxhoj Hahn and I'm the founder and president of the Alagille Syndrome Alliance. This is a true labor of love for which I am paid in hugs, thank you notes, and smiles. I have published the Parent Letters Project: Messages of Love and Appreciation to Children with Liver Disease, AGS and Me: A Coloring Book for AGS Kids, and AGS ‘Tweens to Twenties: A Survival Guide”. I'm a native Oregonian and love the Pacific Northwest, where I'm an avid edible gardener, hiker and mom of three.
I sit on the Oregon Advisory Council of the Pacific Northwest Chapter of the American Liver Foundation, where I helped plan the Northwest Regional Pediatric Liver Disease Symposium in Seattle, WA (2008), and where I assist with the annual Flavors of Portland. I also chair the Patient Advocacy Group Committee and sit on the Steering Committee of the Cholestatic Liver Disease Consortium, an NIH/NIDDK funded research consortium studying AGS and four other cholestatic liver diseases of childhood.