Science / Industry

The ALGSA partners to create and shares amazing resources for healthcare professionals made to accelerate understanding of this complex syndrome and associated health problems. Equally important, healthcare professionals need quick access to resources developed to help patients and families in need.

Global ALagille Alliance (GALA)

Sanford CoRDS ALGS Patient Registry

Invitae PIN ALGS Patient Registry

Partnerships in Industry

It means a great deal to us to have strong relationships with Pharmaceutical and Biotech companies who are working in Alagille Syndrome and other related fields. We have had intricate involvement in the drug development process of two FDA approved drugs for cholestatic liver disease pruritus from start to finish including initial phases, clinical trial, expanded access, and public approval. We played a big role in patient recruitment and continue to guide patients to drug access pathways. We celebrate companies who have worked behind the scenes in drug development and partner to shed light on the impacts to the rare disease communities they serve. Further involvement includes guidance in the development of patient resources and programs, recruitment of patients and caregivers for research intitiatives, family experiences, and patient stories. Elevating the patient voice is our job and we work hard to do that in whatever capacity we can to help pharma and biotech achieve their goals while striving to meet our mission.
What Is Alagille Syndrome?

What Is Alagille Syndrome?

Alagille syndrome is a rare liver condition that is passed down through families. It occurs due to the liver's inability to properly remove bile, which is digestive fluid that contains acids,...