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.
Professional with expertise in this field
As a life science professional with the goal of developing treatments for patients organizations like the Alagille Syndrome Alliance are the key to bringing new treatments to patients. The alliance is not only focused on supporting patients and families in managing their condition but also focused on helping the life science community understand this disease and working together to provide funding for research and supporting research in many other ways. Often times it is organizations like the Alagille Syndrome Alliance that act as the collective voice of Alagille patients and families across the country that help make new therapies a reality.