The ALGSA is very involved in science and research initiatives including many initiatives developed and led right here at the ALGSA. In 2024, the ALGSA is developing the ALGSA Scientific Research Network, expanding on areas of research interest within the community of patients and stakeholders, as well, we are building on our ALGSA Collaborative Scientific Research Grant program that you will see grow this is year.

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.