Translate this page:

Alagille Syndrome Alliance

Last Update:9/22/2017
Contact:Cindy D. Luxhoj
Title:Executive Director
Address:PO Box 4216
Wilsonville, OR 97070
County:Out of state
Phone:(503) 970-1255
Toll Free:
Fax:
TDY:
E-Mail:
Website:www.alagille.org
Mission
Mobilizing resources, facilitating connections, promoting unity, supporting research, increasing public awareness and advocating for a cure to inspire, empower, and enrich the lives of people affected by Alagille Syndrome.
Program Description
Alagille Syndrome (AGS), a genetic disorder, is characterized by insufficient bile flow in the liver, heart and lung malformation, malabsorption, and other symptoms. We are a support network for people who care about those with Alagille Syndrome.

Services:
  • Information--for affected individuals; families of affected individuals; the public or media; professionals (e. g. clinicians, teachers).
  • Support and referral--peer support; matching individuals/ families; medical referrals.
  • Educational Materials--pamphlets; newsletter
Financial
Services
Genetic Disorders
Information & Referral
On-line Community/Listserv/Social Media
Parent to Parent/Matching
Rare Disorders
Counties Serviced
Nationwide
ABOUT SPECIAL KIDS RESOURCE DIRECTORY
7172 Graham Road, Suite 100, Indianapolis, IN 46250 E-Mail: familynetw@aboutspecialkids.org

As a matter of policy, About Special Kids does not specifically endorse any of the resources contained on our website or in our information packets. Resources are supplied for information purposes only and ASK recommends that families explore all options for assistance before making an informed choice.