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10500 SW Starr Drive Cindy Hahn
Phone: 503-885-0455
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Supporting AGS Families, Celebrating the AGS Community, Building a Better Life with AGS. Alagille Syndrome (AGS) is a rare genetic disorder that affects the liver, heart, lungs, and various vessels throughout the body. Because it is a rare condition, people challenged by AGS need to share experiences with others who understand its complexity and unique symptoms. They also benefit greatly frοm access to up-to-date medical information about this condition and consultation with experts in clinical and genetic research. The Alliance provides an invaluable service to individuals and families coping with AGS. Through our newsletter, family conferences, regional meetings, web site, and educational materials we keep people with AGS connected and educated about their disease, enabling them to meet others living with the same challenges. We serve over 400 families worldwide and are the only patient advocacy group in existence for people with AGS. |
The Alliance supports clinical and genetic research of AGS by informing individuals and their families about studies that are in need of subjects. By encouraging families to participate in these important studies, we help the research community achieve the critical mass needed to undertake scientifically valid study of this rare disease. We also ask AGS families to educate their health care providers by sharing our educational booklets and DVD with them and encouraging them to contact the experts on our Medical Advisory Board with questions or concerns about diagnosis, treatment, and management of AGS. On a very tight budget the Alagille Syndrome Alliance makes a huge difference for the AGS Community around the world. The Alliance is a nonprofit organization (Tax ID# 93-1243619) and donations are tax deductible to the full extent of the law. |
