Alagille Syndrome Alliance

About Alagille Syndrome

Alagille syndrome (ALGS) is a rare genetic disorder that can affect multiple organ systems of the body, such as the liver, heart, skeleton, eyes, and kidneys. Common symptoms include blockage of the flow of bile from the liver, yellowing of the skin and mucous membranes, poor weight gain and growth, and severe itching.

Vision

Our vision is simple – that, as a result of our efforts and in partnership with our stakeholders, all ALGS Warriors thrive in a close-knit community full of loving support, easily accessible resources, and life affirming hope.

Goals

The Alagille Syndrome Alliance is built on a steadfast belief in the formidable power of one person to achieve amazing feats and the equally awesome power of many working together to change the world. Based on this foundation, we strive to achieve several fundamental goals:

Support the ALGS community by continuing our innovative efforts that emphasize education, opportunities to connect, access to resources, and individual support;
Build capacity to increase engagement in advocacy and research, helping support development of therapies that benefit ALGS Warriors around the globe;
Engage medical professionals to broaden knowledge of ALGS, develop guidelines for care, communicate with practitioners, and inform medical students through ALGS education;
Offer a symposium every three years for families to access resources that meet their immediate needs and help them thrive;
Leverage staff resources and external relationships to stay financially healthy and sustainable;
Implement an operational model that allows for growth and continues to encourage flexibility and responsiveness to the needs of our community.

Mission

Central to everything we do, this mission statement inspires us to strive for excellence in all facets of our work within the Alagille Syndrome Alliance and in the wider world.

“Mobilizing resources, facilitating connections, promoting unity, and advocating for a cure to inspire, empower, and enrich the lives of people affected by Alagille Syndrome.”

Contact Information