Welcome


Welcome to the Alagille Syndrome Alliance (ALGSA), a prominent and compassionate 501c3 nonprofit organization dedicated to serving individuals, caregivers, and families impacted by Alagille Syndrome (ALGS) on a global scale.

At ALGSA, we stand at the forefront of the fight against ALGS, tirelessly working to provide invaluable support, resources, and a sense of community to those facing this rare and challenging genetic disorder. Our mission is deeply rooted in enhancing the lives of patients and their loved ones, and we do so with unwavering commitment and expertise.

Our worldwide network of individuals and families affected by ALGS is the heart of our organization. Together, we strive to raise awareness, foster connections, and promote cutting-edge research aimed at better understanding and treating ALGS. With the power of collaboration and shared experiences, we are building a brighter future for everyone touched by this condition.

Join us in our mission to empower, educate, and advocate for individuals with ALGS. Together, we can make a significant difference in the lives of those affected by this rare disorder, offering hope, knowledge, and a supportive community that will endure for generations to come.

What We Do

Family & Caregiver Support

The ALGSA is focused on ensuring patients, caregivers, and families affected by ALGS have critical resources, educational materials, and opportunities to make living a life with Alagille Syndrome easier. We offer support in many ways nationally and internationally, and encourage and help all ALGS families to build a solid support system, better understand ALGS, meet other families, particpate and come to events, and know where critical resources are along the way.

Family & Caregiver Support

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.

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.

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.

Testimonials

“The Alagille Syndrome Alliance financial assistance program literally brought me to tears. Tears of joy, that is. 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. Parenting a child with a chronic illness takes more resources. The emotional struggles with worry and stress about my son’s health and well-being has been overwhelming. Very often, a community of relatives and friends cannot 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. We’ve learned to make due. When our oven broke, we switched to using a counter top oven. Our water bill was seriously overdue. Our old car that we rely on for medical appointments needed a new radiator. A conversation with Roberta at the ALGSA quickly put me at ease, lifting the feeling of financial shame and empowering me. This is the most uplifting connection I have made since my son was diagnosed over 10 years ago. The Alagille Syndrome Alliance embraced our needs and the response from the ALGSA for assistance is the most fullfilling experience that I’ve had in many years.”

Alliance Giving Tree Program

“Our family had a very rough 2020, but my daughter had her heart set on a Christmas gift we simply could not afford. The Alagille Syndrome Alliance Giving Tree Program gave us the gift of seeing our daughter’s joy on Christmas morning as she opened it. Thanks to this program, the holiday for us was saved and we are eternally grateful.” – Anonymous

Camden’s ALGS Story

Hello, we are the Johnson family. My name is Shanda, my husband is Colt, our 6-year-old ALGS warrior is Camden, and we have a 3-year-old son Crew.

Sammy’s ALGS Story

I am Heidi and my husband is Tim. We have two boys, Joseph is 3 and Sammy is 2. We live in Northern Utah. Sammy has Alagille Syndrome. We haven’t had genetic testing done, so we don’t know if Joseph does or if it came from either of us.

Dylan & Emmanuel’s ALGS Story

Hello family latin alliance we are the family deck lizarazo of the city of Cúcuta Colombia my name is yasmin my husband Edgar my daughter Gabriela who is a healthy girl my son Dylan Gabriel who has syndrome…

Zairita’s ALGS Story

How cute is the phrase “special children, for special parents”? It generates a family and social conscience; that if you had the joy of having a special child with Alagille, a sincere love and attachement to reality awakens in you…

Tomas’ ALGS Story

His name is Tomas, 3 years old. At 10 days old he turned yellow and was transferred to Mar de Plata on the coast for studies on why the yellow did not go away after 1 month of hospitalization…

Nelson’s ALGS Story

Hello, my name is Lenys Oropeza, I am the mother of Nelson USECHE. We are from Venezuela. Currently Nelson is 16 years old. Nelson was born on February 26, 2005. He was diagnosed at two months of age with Alagille Syndrome due to hypoplasia of the bile ducts, vertebrae with butterfly wings, and jaundice. At that time, they did the kasai surgery and they told us that he possibly needed a liver transplant.