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
ALGS Mom, Massachusetts
“The financial assistance program literally brought me to tears. Parenting a child with a chronic illness takes more resources. The emotional struggle – worry and stress – about my son’s health and well-being has been overwhelming. Very often a community of relatives and friends can’t understand the family dynamic that includes a child with a life-threatening illness. This has caused isolation for my son and me. Holding it together financially has been close to impossible and shameful for falling short. Feeling the caring and genuine concern from people who can relate is a tremendous relief. What an amazing connection the Alliance has provided to my son and me. A conversation with the ALGSA quickly put me at ease, lifting the feeling of financial shame, and empowering me. This is the most uplifting connection that I’ve made since my son was diagnosed over 10 years ago.”
ALGS Mom, Manitoba, Canada
“The ALGSA program has been a great support – from myself being able to follow on social media and connect with other families, to read stories and not feel so isolated. We have access to so many documents that can support our everyday life as we navigate this rare disease – documents for Dante’s teachers and childcare providers, his siblings, and even for me to share to another mother in Indonesia that did not know about the ALGSA website, program and tools to help her better understand and have resources (love the other languages available). “
ALGS Mom, USA
“Thank you endlessly for letting us be part of the Holiday Family Gift Adoption Program this year. Due to illnesses, a large Christmas was not an option. My daughter was screaming happy screams with her gifts. They were absolutely perfect for her. The day after Christmas, my daughter was unfortunately hospitalized. I brought her new toys with her to the hospital, and they were the only things that brought her joy. It means a lot to me to have people who support her and want to help her be successful and happy. It would have been an incredibly long hospital stay and sad Christmas if it was not for the Christmas program.”
ALGS family, Nairobi, Kenya
“The Christmas program from Alagille Syndrome Alliance helped us so much. We bought our son new school uniforms and paid his school fees to a new school with better hygiene. Our hero is thriving now that we got him to a new school”
Upcoming Events
ALGSA Monthly Bereavement Support Group
ALGSA Monthly Bereavement Support Group
May 27th, 6pm EDT – the ALGSA offers recurring virtual monthly support groups for bereaved individuals and family members who have lost a loved one with ALGS. These groups are open internationally and are in English. Facilitated by Dr. Al Freedman, the support group...
Caregiver Support Group
Caregiver Support Group
The Caregiver Support Group is a recurring monthly support group that meets virtually, rotating days and times each month to be more accessible for national and international caregivers. The participants are caregivers of patients affected by ALGS. This support group is...
ALGSA Support Group – Adults 18+ with ALGS
ALGSA Support Group – Adults 18+ with ALGS
June 17th, 2025 – ALGSA Support Group – Adults 18+ with ALGS only In 2024, the ALGSA started recurring, monthly, virtual support groups for adult patients with ALGS ages 18+. The
Caregiver Support Group
Caregiver Support Group
The Caregiver Support Group is a recurring monthly support group that meets virtually, rotating days and times each month to be more accessible for national and international caregivers. The participants are caregivers of patients affected by ALGS. This support group is...
ALGSA Monthly Bereavement Support Group
ALGSA Monthly Bereavement Support Group
June 18th, 1pm EDT – the ALGSA offers recurring virtual monthly support groups for bereaved individuals and family members who have lost a loved one with ALGS. These groups are open internationally and are in English. Facilitated by Dr. Al Freedman, the support grou...