Alliance News

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).

Our research partner:

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.

Virtual Events in October

Read all about the virtual events we have planned for October. There are many opportunities for ALGS families to connect and learn together.

What Is Alagille Syndrome?

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,...

Rare Disease Care

Rare Disease Care

Your content goes here. Edit or remove this text inline or in the module Content settings. You can also style every aspect of this content in the...

Giving Program Testimony

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...

Mom to ALGS Young Adult

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 conc

ALGSA Symposium 2024

Symposium is a great gathering for families and medical professionals. There is a lo of good information exchanged and shared.

Virtual Events in October

Virtual Events in October

our content goes here. Edit or remove this text inline or in the module Content settings. You can also style every aspect of this content in the...

Camden’s ALGS Story

Camden’s ALGS Story

Meet Camden! 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...

Sammy’s ALGS Story

Sammy’s ALGS Story

  Meet Sammy! 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...

Zairita’s ALGS Story

Zairita’s ALGS Story

Meet Zairita! Que linda la frase “hijos especiales, para padres especiales” , eso genera una conciencia familiar y social;  que si tuviste la dicha...

Tomas’ ALGS Story

Tomas’ ALGS Story

Meet Tomas! El se llama tomas de 3 años..alos 10 dias de nacido se puso amarillo y fue trasladado a mar de plata la costa para estudios del por que...

Nelson’s ALGS Story

Nelson’s ALGS Story

Meet Nelson! Hola, mi nombre es Lenys Oropeza, soy madre de Nelson USECHE. Somos de Venezuela. Actualmente Nelson tiene 16 años. Nelson nació el 26...

Baraka’s ALGS Story

Baraka’s ALGS Story

Meet Baraka! Brylejones Baraka, second born in our family, was born in October 2019. Five weeks after his birth he developed complications of...

Paula’s ALGS Story

Paula’s ALGS Story

Meet Paula! Paula Andrea Suarez González Nacida en Bucaramanga en estos momentos vivimos en Barrancabermeja (Santander) Colombia para nosotros fue...

Heather’s ALGS Story

Heather’s ALGS Story

Meet Heather! Hello, my name is Heather Gray and I live in Lowell, Michigan. I am an adult with Alagille Syndrome. I also have two biological...

Kenneth’s ALGS Story

Kenneth’s ALGS Story

Meet Kenneth! Kenneth came into our lives on August 05, 2011. When he was born, they quickly realized that something was not right because of his...

Reece’s ALGS Story

Reece’s ALGS Story

Meet Reece! I am Paige, wife to Chris, and mom to 3 kids, 6-year-old twins and a 2-year-old, Reece, with ALGS, who will be 3 yrs old in April. We live

Reed’s ALGS Story

Reed’s ALGS Story

Meet Reed! My name is Katie Harrell. My husband’s name is Garrett and our son is Reed. We live outside of Greenville, North Carolina. Our son Reed...

Emiliano’s ALGS Story

Emiliano’s ALGS Story

Meet Emiliano! Hola mi nombre es Angelica gerena y el de mi esposo Jhon mario mejia de nacionalidad colombianos específicamente de la ciudad de Armeni

Tanner’s ALGS Story

Tanner’s ALGS Story

Meet Tanner! Our Alagille Warrior, Tanner, age 7, is the youngest of our 3 boys.  Our family of 5 lives in Olathe, KS and our team of doctors is at...

Roxy’s ALGS Story

Roxy’s ALGS Story

Meet Roxy! Hi, My name is Roxy, I have Alagille Syndrome, and live in Henderson, Nevada.  Together with my mother, Firouzeh, and my father, Ramin,...

Finley’s ALGS Story

Finley’s ALGS Story

Meet Finley! Meet Dani, Jay, Jackson and Finley Sandstrom. We live in Snohomish, WA, and our youngest son Finley was officially diagnosed with...

Jordan’s ALGS Story

Jordan’s ALGS Story

Meet Jordan! We are the Bate family.  We live in Brisbane Australia.  Our family consists of our ALGSA Warrior Jordan, his twin brother, Harrison,...

Eli’s ALGS Story

Eli’s ALGS Story

Meet Eli! Alagille dad, Elias Otero, was recently named Fan of the Year by the Indianapolis Colts of the NFL. Otero and his son, Eli, are the father...

Derek’s ALGS Story

Derek’s ALGS Story

Meet Derek! Hi, my name is Anna. Our family consists of myself, my fiancé Dillon, daughter Amelia, and two sons, Derek and Andrew. Derek has...

Luke’s ALGS Story

Luke’s ALGS Story

Meet Luke! We are the Bird family: Kevin, Julia, and ALGS Warrior Luke.  We live in Washington state just south of Seattle and have been fortunate...

Elijah’s ALGS Story

Elijah’s ALGS Story

Meet Elijah! We are the Lampear family, Kayla, Jon, Jackson, and Elijah. We live in Michigan. Our son Elijah was diagnosed with Alagille Syndrome....

Kenny’s ALGS Story

Kenny’s ALGS Story

¡Conoce a Kenny! Meet Kenny! English version below Kenneth, nuestro hijo, nació el 5 de agosto de 2011 con una bilirrubina muy alta. El Dr. Leonardo H

Megan’s ALGS Story

Megan’s ALGS Story

Meet Megan! When my daughter, Megan, was diagnosed in 2006 there was not much information around on Alagille Syndrome. As a matter of fact, when she...

ALGSAssistance Form

The Alagille Syndrome Alliance considers financial assistance to families with children, youth or adults receiving treatment for Alagille Syndrome....

Ivan’s ALGS Story

Ivan’s ALGS Story

Meet Ivan! My name is Ivan Fernandez. I’m a twenty-year-old Mexican male, and this is my story. When I was born, the doctors told my parents I had...

Isaiah’s ALGS Story

Isaiah’s ALGS Story

Meet Isaiah! At the age of 2 months, Isaiah was misdiagnosed with Biliary Atresia because of the yellowish skin. At first, I doubted our 3 pedia...

The ALGS Awareness Ribbon

The ALGS Awareness Ribbon

ALGSAware The Alagille Syndrome Alliance awareness ribbon for ALGS reflects the significantly complex and uniquely varying severity of the disease...

Keira’s ALGS Story

Keira’s ALGS Story

Meet Keira! Keira, my niece, was born February 19, 2011, with two holes in her heart, one an Atrial Septal Defect and the other a Patent Ductus...

Subscribe to e-news

[mailmunch-form id="663837"][dssb_sharing_buttons _builder_version="4.20.4" _module_preset="default" saved_tabs="all" global_colors_info="{}" global_m

ALGSA Gala of Dreams

ALGSA Gala of Dreams - The Dawn of a Dream On June 30, 2018, the ALGSA celebrated many of the Champions who work tirelessly to bring our Dreams to a...

Greyson’s ALGS Story

Greyson’s ALGS Story

Meet Greyson! Greyson is a happy 9 month old who had a liver transplant last month. This is his story. It all started when Grey was born. He was 3...

Bryce’s ALGS Story

Bryce’s ALGS Story

Meet Bryce! Our family is relatively new to the ALGS world.  Shortly after he was born, our son Bryce was diagnosed with Alagille syndrome.  It has...

Jose Luis’ ALGS Story

Jose Luis’ ALGS Story

Meet Jose Luis! Hi, I’m José Luis. I was born on March 13, I’m 29 years old, and I’m a Warrior! I was born yellow and then diagnosed with Alagille...

Kayara’s ALGS Story

Kayara’s ALGS Story

Meet Kayara! My name is Shanika.  I am originally from Sri Lanka and now live in Singapore.  I have two daughters.  My elder daughter is 7 years...

Rae’s ALGS Story

Rae’s ALGS Story

Meet Rae! Before I met my husband, I never knew anybody suffering from a chronic illness.  Corey spent his childhood suffering from liver failure. ...

Jude’s ALGS Story

Meet Jude! Our two-year-old son Jude has Alagille.  I’m amazed at how the ALGSA community has helped our family on our journey.  I have come to know m

Dante’s ALGS Story

Dante’s ALGS Story

Meet Dante! When Dante was born just over three years ago in El Salvador, the doctor recognized high levels of bilirubin and he remained under the...

Mary’s ALGS Story

Mary’s ALGS Story

Meet Mary! “Every heart breaks so it can let more light in”   This was especially true for me last year. On January 31st, 2017, my sweet sister Mary...

Carlie’s ALGS Story

Carlie’s ALGS Story

Meet Carlie! Carlie Hope was born about 4 weeks early on July 16, 2001 at 6lb 2 oz.  Carlie was so petite, red and wiggly….just perfect.  She was...

Erika’s ALGS Story

Erika’s ALGS Story

Meet Erika! My name is Erika. I'm 27 years old and I live with my boyfriend in Fredericia, Denmark. I was born with a bad liver, a narrowing on my...

Avery’s ALGS Story

Avery’s ALGS Story

Avery Glenn Avery Glenn was a feisty, headstrong girl who lived her brief life to the fullest. She was born with a severe case of jaundice, which...

Kristjan’s ALGS Story

Kristjan’s ALGS Story

Story of Kristjan Kristjan was going to be born 1 March 2010 but he came 18th February. He was blue and didn't breath at all and it took doctors 20...

Jude’s ALGS Story

Jude’s ALGS Story

Jude's ALGS Story Our 2 year old son Jude was born with a congenital heart defect called Tertrology of Fallot, which we were NOT aware of before...

ALGSA News

RSS Feed

Industry

What Is Alagille Syndrome?

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,...

Rare Disease Care

Rare Disease Care

Your content goes here. Edit or remove this text inline or in the module Content settings. You can also style every aspect of this content in the...

ALGSA Symposium 2024

Symposium is a great gathering for families and medical professionals. There is a lo of good information exchanged and shared.

Virtual Events in October

Virtual Events in October

our content goes here. Edit or remove this text inline or in the module Content settings. You can also style every aspect of this content in the...

The ALGS Awareness Ribbon

The ALGS Awareness Ribbon

ALGSAware The Alagille Syndrome Alliance awareness ribbon for ALGS reflects the significantly complex and uniquely varying severity of the disease...

Subscribe to e-news

[mailmunch-form id="663837"][dssb_sharing_buttons _builder_version="4.20.4" _module_preset="default" saved_tabs="all" global_colors_info="{}" global_m

ALGSA Gala of Dreams

ALGSA Gala of Dreams - The Dawn of a Dream On June 30, 2018, the ALGSA celebrated many of the Champions who work tirelessly to bring our Dreams to a...

No Results Found

The page you requested could not be found. Try refining your search, or use the navigation above to locate the post.