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 2 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 2016 we expect 150+ people to gather for our 7th International Symposium to be hosted in San Diego.
- 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 Board of Directors
Anna K. Chow, President
Joseph M. Anderson, Vice-President
Erik K. Luxhoj
Patricia H. Everett
Wanda L. Sheppard
Roberta A. Smith
Alaina K. Hahn, Honorary Board Member
Our Executive Director
Cindy L. Hahn
Our Education Advisor
William J. Glenn, JD, PhD