Loading...
ABOUT US2018-07-10T18:16:44+00:00

WHO WE ARE


The Alagille Syndrome Alliance is an international nonprofit started in 1993, representing the ALGS community and based out of Oregon in the US. This organization is comprised of 2 staff members and 9 board members, working remotely. The Board of Directors locations span globally from London, India, Canada, and the US,  allowing for more global outreach, a top priority for the ALGSA. Together, we continue the work of the organization with the sole purpose of making living a life with Alagille Syndrome easier. The ALGSA staff and board includes ALGS patients and family members, all deeply understanding of the complex and difficult nature of ALGS and circumstances resulting from such difficulty.
Staff bios can be found HERE.
Director bios can be found HERE.

MISSION


 Central to everything we do, this mission statement inspires us to strive for excellence in all facets of our work within the ALGSA 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.”

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 ALGSA 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.

CHANGING LIVES TODAY

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

DONATE NOW