Mission: We support families and individuals with ALGS, provide up to date information on ALGS to patients and their health care providers, and connect patients with research opportunities. We are building a better life with ALGS through advocacy, education and research.
Results: In 2013 we will be funding research grants and working on collaborating with our Medical Advisory Board on a patient registry, which will assist with research initiatives. We're hosting Family Education days in Boston, Seattle, and Kansas City or Omaha. Our ALGS in the Classroom booklet is being revised and we are compiling two FAQs - one on Questions for Specialists and one on Standard of Care. We continue to welcome new families to our organization and to maintain an active presence on Facebook.
Target demographics: Everyone with ALGS - infants, children, teens, young adults, adults... as well as their families, care givers, and health care providers.
Geographic areas served: Worldwide
Programs: We have a website at www.alagille.org with a wealth of information and links to helpful resources, as well as a bulletin board. We are on Facebook, Twitter and YouTube, publish a quarterly newsletter, and offer several helpful publications for families including a DVD on ALGS. Every three years we host a family conference, and in the years in between we host AGS Family Education Days.
My niece has Alagille Syndrome which is why I became involved with the Alliance. We started as a small group and have grown into a full fledged support group for ALGS families. We are now embarking on another chapter of our organization with our recent announcement of funding ALGS research. It is an exciting time to be a part of the Alliance, and I look forward to the future.