ALGSA Connection

ALGSA Connection highlights news that intertwines both ALGSA updates, national and global news articles about ALGS patients, industry and academia partners, the ALGSA, or other significant initiatives important to all ALGSA stakeholders.

Team Small but Mighty – Importance of Patient and Family Involvement in Fundraising Initiatives Q & A

Learn why ALGS Mom, Erin Hasselberg Lucca, participates in the Fight for a Better Life campaign each year and how she views working in partnership as a parent to advocate and raise awareness for patients and families and the ALGSA. Q. What is your relationship to...

Christina

Meet Christina! My name is Christina, I’m from London. I was diagnosed with ALGS when I was six after my ophthalmologist noticed both myself and my dad had abnormal eye structure. It turned out I’d inherited the condition from him, but neither of his parents had it....

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...

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.

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.

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 3-year-old son Crew.

Christina

Christina

Meet Christina! My name is Christina, I’m from London. I was diagnosed with ALGS when I was six after my ophthalmologist noticed both myself and my...

Rare Disease Care

Rare Disease Care

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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

Camden

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

Sammy

  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...

Dylan & Emmanuel

Dylan & Emmanuel

Meet Dylan and Emmanuel! Hola familia alianza latín nosotros somos la familia baraja lizarazo de la ciudad de Cúcuta Colombia mi nombre es yasmin mi...

Zairita

Zairita

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

Tomas

Tomas

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

Nelson

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

Baraka

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

Paula

Paula

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

Heather

Heather

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...

Deisy Franco

Deisy Franco

Meet Deisy Franco! Mi nombre es nayibe Martinez. Oriunda Balboa cauca. Actualmente me encuentro radicada en la ciudad de popayan cauca Colombia.. El...

Kenneth

Kenneth

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

Reece

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...

Sara and Isabela

Sara and Isabela

Meet Sara and Isabella! Buenos días cordial saludo mi nombre es Sulien Ortega hoyos de popayán cauca. Colombia madre de 2 nenas sará salomé sanchez...

Reed

Reed

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

Emiliano

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

Tanner

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

Roxy

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

Finley

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

Jordan

Jordan

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

Eli

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...

Derek

Derek

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

Luke

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

Elijah

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

Kenny

¡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

Megan

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

Ivan

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...

Corey and RaeLynn

Corey and RaeLynn

Meet Corey and RaeLynn! Corey, Jazmyn, and RaeLynn As the mother and wife of ALGS warriors, a discovery for ALGS would mean the entire world to my...

Isaiah

Isaiah

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

Keira

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...

Greyson

Greyson

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

Bryce

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

Jose Luis

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 syn

Kayara

Kayara

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

Rae

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

Jude

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

Dante

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

Mary

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

Carlie

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

Erika

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

Avery

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

Kristjan

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

Jude

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

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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...

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