Cindy Hahn
Founder and President
Alagille Syndrome Alliance

Cindy Hahn is founder and president of the Alagille Syndrome Alliance, a patient advocacy group based in Tualatin, OR. Cindy founded the Alliance in 1993 to meet other parents and give her daughter Alaina, who was born with AGS, a support network as she struggled with the challenges of this rare genetic disorder. Today the Alliance’s programs serve over 500 families worldwide, and Alaina is a 17-year-old spokesperson for AGS research and education. Cindy continues to guide the Alliance as president, a true labor of love for which she is paid in hugs, thank-you notes, and smiles.

Cindy has 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”. She sits on the Oregon Advisory Council of the Pacific Northwest Chapter of the American Liver Foundation, where she helped plan the Northwest Regional Pediatric Liver Disease Symposium in Seattle, WA, and where she assists with the annual Flavors of Portland. Cindy also chairs the Patient Advocacy Group Committee and sits 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. A native Oregonian, Cindy loves the mountains, rugged coasts, and green scenery of the Pacific Northwest, grows strawberries in her front yard, and wears shorts when its sunny, even if its only 60 degrees outside.