Nelson's Story

Virtual Events in October

Mirum Research Study Blows Up

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The Global ALagille Alliance (GALA) Study

The Global ALagille Alliance (GALA) Study is a global initiative to create an international database of clinical, genetic, and laboratory data in children and young adults with Alagille Syndrome (ALGS). The GALA study is led by Principal investigator, Dr. Binita M...

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, electrolytes, and other substances. This inability is caused by a lack of...

Scientific Meeting on Alagille Syndrome and Research Round Table Event

The International Symposium on Alagille Syndrome event is in-person every other year and virtual in the off years. While in-person, we take the opportunity to bring together brilliant minds in Alagille Syndrome.

ALGSA Builds Meaningful Relationships to Advance Science

The ALGSA is highly committed to helping scientists, researchers, and clinicians reach their scientific and research goals for the benefit of ALGS families around the world.

ALGSA Collaborative Scientific Research Grant

In 2019, the ALGSA developed the ALGSA Collaborative Scientific Research Grant, a 2-year, $150,000 award, given $75k annually, to one scientist, researcher, or clinician studying Alagille Syndrome.

Rare Disease Care

One of the key challenges in rare disease care is the limited understanding of these conditions. Many rare diseases are genetic or congenital, and research into their causes and potential treatments is often underfunded. Patients and their families frequently face diagnostic odysseys, enduring years of uncertainty before receiving a proper diagnosis.

Giving Program Testimony

“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.”

Mom to ALGS Young Adult

“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.”

Mom to ALGS young adult
Massachusetts, USA

ALGSA Symposium 2024

Come join other ALGS families at a fun and informative event. We have topics to fit every ALGS family from ALGS 101 to deep dives into the genetics of ALGS and current research on the disease.

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.

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Important Links

Visit the GALA Study website, here: https://www.galastudy.com/

Connect with the GALA Data Coordinating Centre (DCC) Team, here: https://www.galastudy.com/participating-centres

More News

Rare Disease Care

Rare Disease Care

One of the key challenges in rare disease care is the limited understanding of these conditions. Many rare diseases are genetic or congenital, and research into their causes and potential treatments is often underfunded. Patients and their families frequently face diagnostic odysseys, enduring years of uncertainty before receiving a proper diagnosis.

ALGSA Symposium 2024

Come join other ALGS families at a fun and informative event. We have topics to fit every ALGS family from ALGS 101 to deep dives into the genetics of ALGS and current research on the disease.