Welcome to
ALGSA
Welcome to the Alagille Syndrome Alliance (ALGSA)—a dedicated, compassionate 501(c)(3) nonprofit organization serving individuals, caregivers, and families impacted by Alagille Syndrome (ALGS) around the world.
At ALGSA, we lead with purpose and heart—delivering vital support, trusted resources, and a strong sense of community to those facing this complex, rare genetic disorder. Our commitment is grounded in improving the lives of ALGS patients and their loved ones through collaboration, education, and empowerment. We are deeply engaged in science and research, working tirelessly to drive initiatives that uncover real answers, improve treatments, and ultimately lead to a cure. Through our research network and programs, we bring together all key stakeholders—physicians, scientists and researchers, biotech and pharmaceutical companies, patients and families, and other nonprofits facing similar medical challenges—to advance knowledge, fill critical gaps, and keep the patient voice front and center.
The ALGSA community spans the globe, and the families and individuals we serve are the heart of our mission. Together, we raise awareness, build powerful connections, and promote scientific innovation through collaboration and shared experiences. With each partnership, we move closer to a brighter future for all who are touched by this condition.
Join us as we continue to educate, advocate, and inspire hope for the ALGS community—now and for generations to come.
Mission Statement
The Alagille Syndrome Alliance (ALGSA) is dedicated to mobilizing resources, facilitating research, and providing support to improve the lives of people affected by Alagille Syndrome.





Our Partners
















What We Do

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Family & Caregiver Support

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Advocacy & Awareness
Advocacy and awareness of Alagille Syndrome is so important. Efforts in advocacy and awareness help improve legislature, increase science and research funding, advance scientific understanding of ALGS, educate communities, families, and greatly improves funding opportunities that urgently supports families around the world. Let us help you understand what opportunities are available and what might fit your needs with the time you have. Giving back to this community is such a wonderful gift.

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Science & Research
We are deeply involved in science and research initiatives for Alagille Syndrome. The ALGSA has a large ALGSA Collaborative Scientific Research Grant, supports the Global ALagille Alliance, has a 3-way Cooperative Research And Development Agreement (CRADA) with Travere Therapeutics and NCATS/NIH, and are involved in many other initiatives. We are eager to meet scientists and researchers working in the field, have the ability to help in many ways, and offer opportunities for scientists and researchers to meet families, engage in the community, and at events.

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Family Conference & Events
Events for families, industry partners, physicians and medical professionals, and scientists and researchers can be life changing. Many patients and families affected by ALGS have never met another family in-person and many scientists and researchers working in Alagille Syndrome do not get the opportunity to communicate with families or physicians about ALGS. Here at the ALGSA, we offer opportunities for all stakeholders to attend events, participate as speakers, meet families, share their work, and learn about Alagille Syndrome.

Family Stories
Patients and families affected by Algille Syndrome are The Heart of all we do at the ALGSA. Individual and family stories have significant purpose and bring value in many ways.
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Testimonials


Upcoming Events
