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 son has Alagille Syndrome and when he was diagnosed in March 2012 I felt my world came crashing down with the devastating news. But as I did research I found this Alliance became my go-to for updates, questions and most importantly, finding others to connect with!! I love the growth charts the Alliance has provided because they are more accurate than the standard charts for baby boys. I also love that my family gets to participate in our first Alagille Syndrome Awareness walk this year and I would have never known about it had I not connected with families in the Massachusetts areas. Great group and I'm so happy to be a part of it!