Who We Are
The Alagille Syndrome Alliance (ALGSA) is an international nonprofit network serving people with Alagille Syndrome (ALGS) and their families. ALGS is a rare genetic disorder that affects about 1 in every 35,000 people. The genetic mutation in the ALGS gene – JAG1 – causes organs in the body to develop abnormally, especially the liver, heart, kidneys and blood vessels, and there is no known cure.
Here are just a few examples of the resources we provide:
- Every 3 years we sponsor a 3-day family conference that brings together patients, families, care providers, and physicians in an informal setting for networking, learning and fun. In June 2014 we expect 150+ people to gather for our 6th International Symposium to be hosted in the Washington DC area for the first time.
- We publish educational materials such as ALGS in the Classroom and the ALGS and Me coloring book. We have distributed 100's of copies of the ALGS DVD (2nd Ed), co-produced with the Children's Hospital of Philadelphia and Digestive Care Inc., around the world.
- Through our website we provide links to reliable medical information, an online forum, and current issues of our Links4Life newsletter. We also have a loyal following of 1700+ on Facebook, a presence on Twitter and Pinterest, and earned Great Nonprofits Top-Rated 2012 status.
- Every year we host 2-3 regional events for families to meet, learn about ALGS and share experiences. In 2012 we served 20 families in Raleigh/Durham NC, Orlando FL, and Los Angeles CA, and in 2013 events are planned for Boston MA, Seattle WA and St. Louis MO.
- We fund an ALGS research grant program and encourage families to participate in research studies. This year we awarded two grants totaling $96,000 over two years and are proud to be among the Founding Registry Partners of the PatientCrossroads CONNECT program.
The guiding ideal that drives us is simple: Celebrate the ALGS community and help those challenged by ALGS build a better life through education, collaboration and research.
Our Founding Officers
Cindy L. Hahn, President & CEO
Chris J. Hahn
Erik K. Luxhoj
Our Board of Directors
Joseph M. Anderson
Anna K. Chow
Patricia H. Everett
William J. Glenn, JD, PhD
Wanda L. Sheppard