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 ALGSA is the primary resource for people with ALGS, their families and friends who form a close-knit community to provide mutual support, share information, and connect to resources. As the source of current, accurate information on ALGS and its treatment, we provide financial support for research and are actively involved in encouraging our members to participate in research studies.
- Support the ALGS community. We will continue to support the ALGS community through innovative efforts that emphasize education, opportunities to connect, access to resources, and individual support.
- Develop capacity to strengthen patient advocacy and research. By increasing engagement in the advocacy and research arena, the ALGSA will help support development of therapies that benefit patients.
- Engage the medical community to broaden knowledge and inform the ALGS community. We will engage the ALGSA Medical Advisory Board to develop a standard of care, communicate with practitioners, and engage medical students in ALGS education.
- Develop a self-sustaining symposium that is responsive to the needs of the ALGS community. The ALGSA will offer a more frequent symposium (every two years rather than every three) and will offer more opportunities for families to access resources that meet their immediate needs.
- Achieve fiscal sustainability through fundraising. By leveraging staff resources and external relationships, the ALGSA will continue to be financially sustainable. Increased financial resources will allow the ALGSA to grow and increase overall impact.
- Refine administrative framework to support growth of the organization. The ALGSA will align staff resources to the strategic goals, develop an operational model that allows for growth, and continue the current trajectory that encourages growth, flexibility, and responsiveness to stakeholders.