Mobilizing resources, facilitating connections, promoting unity, and advocating for a cure to inspire, empower, and enrich the lives of people affected by Alagille Syndrome.
The Alagille Syndrome Alliance (ALGSA) is the primary contact point for people with ALGS, their families and friends. Members form a close-knit community, gathering together to provide mutual support, information and tangible assistance when needed. This community is facilitated through the Internet as the first and primary contact point and through active regional groups. We bring the entire community together every three years, and the regions gather annually. The ALGSA is a source of tangible support for people with ALGS, their families and friends. Such support may include emergency assistance to families in crisis, advocacy for insurance coverage, an annual camp for children, scholarships, and other assistance. The ALGSA is the source of current, accurate information on ALGS and its treatments. We are a financial supporter of research and are actively involved in encouraging our members to participate in research studies. The ALGSA is a major source of referral information, maintaining information about physicians and medical programs offering effective treatments for ALGS. We are a source of information for health care providers seeking to initiate or enhance their services to people with ALGS. The ALGSA is a well-run organization with paid staff providing effective services. We are supported through a well-established fundraising program using a variety of techniques to generate funding to support the priorities of the Board of Directors.
- Support Network - Provide a support network for people whose lives have been touched directly or indirectly by ALGS.
- Family Gatherings - Provide a forum that enables ALGS families to meet one another on a regular basis for mutual support and sharing of current information on ALGS.
- Gather and Distribute Information - Gather and distribute information about ALGS, research studies, and helpful services to ALGS families, friends and health care providers.
- Increase Public Awareness - Increase public awareness of ALGS.
- Involve Members in Programs and Services - Involve as many members as possible in Alliance programs and services.
- Research - Support research efforts on behalf of the ALGS Community.
- Administration - Operate a well-run organization delivering effective services supported through a well-established fundraising program consistent with the priorities of the Alliance Board of Directors.
Objectives for each goal are detailed in the current year's Work Plan.