ALGSA

About

The Alagille Syndrome Alliance (ALGSA) is the leading 501c3 patient advocacy organization in the world serving families affected by Alagille Syndrome, a rare cholestatic liver disease and one of over 7,000 rare diseases in the world.

The ALGSA staff and board is made up of professionals in the ALGS community including patients, caregivers, and friends all deeply understanding of the complex and difficult nature of ALGS.

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

VISION ALGS Warriors thrive in a close-knit community full of loving support, easily accessible resources, and life affirming hope.

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 needs and help them thrive.
• Levereage 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.