Patients & Caregiver

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.

New Diagnosis

We understand a new diagnosis of Alagille Syndrome is a lot to take in and process. You may be feeling overwhelmed, scared, and a plethera of other emotions. We are here to help you through this very difficult time. By connecting with us, we can help provide you with resources you need, be an ear, help you get started building your support system, and facilitate connections you may need. Our board and staff includes ALGS patients, family members, and supporters who understand every phase of this syndrome and we want to help. To the right, you will find links for our disease education page, an ALGSA Intro Form where you can connect and introduce yourself and your family, the new diagnosis guide to get you started. You can also find links to our Facebook main page, a private Facebook support page, our family program guide, and lastly the link to our resource library here on our website.

Disease Education

Intro Form

New Diagnosis Guide

Facebook Page

Private Support Page

Family Program Guide

ALGSA Resource Library

Get to Know About ALGSA

We encourage patients, caregivers, and families to connect with the ALGSA for a number of reasons. First and foremost, the ALGSA can meet you where you are in your Alagille Syndrome diagnoses and help in many ways you wouldn’t expect. We strive to make connecting with the ALGSA a pleasant experience and hope that patients and their family members leave the conversation feeling uplifted, understood, and more knowledgeable about the available programs and resources. The ALGSA is very involved with medical teams, science labs, drug development, research initiatives, and has meaningful partnerships with institutions, biotech and pharmaceutical companies, rare disease nonprofits, and other organizations that share the same or similar goals. Lastly, we never want ALGS patients and families to feel alone in their experience, therefore, the ALGSA helps individuals build a lasting support system of friends, medical support, and resources. The Alagille Syndrome Alliance team of staff and board are made up of patients, family members, and friends who just “get it”. In the last year, the ALGSA recruited over 50 ALGS patients and families to scientific and research initiatives, over 45 families got help with Christmas, over $65,000 went to help families with financial assistance, and 1500+ personal touchpoints were made with patients and caregivers through email, messaging, and phone support. Our website houses many testimonies on the home page from Alagille families and supporters around the world. Introduce yourself and/or your family via the ALGSA Contact Form! We can’t wait to meet you!