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Alagille Syndrome Alliance
Stay strong. Press on.
About Alagille Syndrome Alliance
"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 is a 501(c)(3) public charity with a Medical Advisory Board, a quarterly newsletter and web site that reachs families worldwide. We provide a vital link between families and offer them the resources they need to help their children live longer and healthier lives. 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.
Verified activity
Signals from Alagille Syndrome Alliance
6 published signals
Presence & Recognition
Alagille Syndrome Alliance featured Sylvain Berthelot in an article discussing rare disease patient-centricity.
Reported by Roberta Smith, CNMT
Presence & Recognition
Alagille Syndrome Alliance is hosting the 2027 Cholestatic Liver Disease Summit in Kansas City, Missouri, from June 24 to 26, 2027, at the Westin Kansas City at Crown Center.
Reported by Alagille Syndrome Alliance
Presence & Recognition
Alagille Syndrome Alliance opened up the 2027 Cholestatic Liver Disease Summit registration.
Reported by Roberta Smith, CNMT
Presence & Recognition
Alagille Syndrome Alliance hosted the 12th International Symposium on Alagille Syndrome: Mission in Motion presented by Mirum Pharmaceuticals and Ipsen Biopharmaceuticals, which welcomed nearly 200 registrants for two days of learning, connection, and meaningful conversation.
Reported by Alagille Syndrome Alliance
Presence & Recognition
Alagille Syndrome Alliance is hosting an event on September 10 from 7:00pm to 8:30pm EST featuring patient advocacy discussions.
Reported by Roberta Smith, CNMT
Research & Knowledge
Alagille Syndrome Alliance published the Findings From the 2025 Cholestatic Liver Disease Summit Research Roundtable Meetings white paper capturing perspectives from patients, caregivers, clinicians, researchers, and industry partners across Alagille Syndrome, PFIC, Biliary Atresia, and other cholestatic liver diseases.
Reported by Alagille Syndrome Alliance