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.
Amari
Meet Amari My 6-year-old son Amari was diagnosed with Alagille Syndrome at 5 months old. This was after I pressured his pediatrician to send him for...
Gladstone Family
Meet The Gladstone Family! We are the Gladstone Family from Albury, NSW, Australia. I'm Tenille, and my husband is Ben. Our family includes our...
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...
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...
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...
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...
Rare Disease Care
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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
“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
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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
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
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
Meet Zairita! Que linda la frase “hijos especiales, para padres especiales” , eso genera una conciencia familiar y social; que si tuviste la dicha...
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
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
Meet Baraka! Brylejones Baraka, second born in our family, was born in October 2019. Five weeks after his birth he developed complications of...
Paula
Meet Paula! Paula Andrea Suarez GonzálezNacida en Bucaramanga en estos momentos vivimos en Barrancabermeja (Santander) Colombia para nosotros fue...
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
Meet Deisy Franco! Mi nombre es nayibe Martinez. Oriunda Balboa cauca. Actualmente me encuentro radicada en la ciudad de popayan cauca Colombia.. El...
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
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
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
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
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
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
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
Meet Finley! Meet Dani, Jay, Jackson and Finley Sandstrom. We live in Snohomish, WA, and our youngest son Finley was officially diagnosed with...
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
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
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
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
Meet Elijah! We are the Lampear family, Kayla, Jon, Jackson, and Elijah. We live in Michigan. Our son Elijah was diagnosed with Alagille Syndrome....
ALGSAssistance Form – Spanish
Formulario de asistencia para el síndrome de Alagille La Alianza del Síndrome de Alagille considera la asistencia financiera a las familias con...
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
ALGSAssistance Continuity of Care Application Form
As a Global Genes RARE Foundation Alliance member, the ALGSA has received a continuity of care RARE Patient Impact Grant. Global Genes has launched...
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...
ALGS Research Grants Call for Applications
Alagille syndrome call for research grant proposals Full alagille syndrome research grant proposals must be received by the ALGSA no later than...
ALGSAssistance Form
The Alagille Syndrome Alliance considers financial assistance to families with children, youth or adults receiving treatment for Alagille Syndrome....
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
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
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
ALGSAware The Alagille Syndrome Alliance awareness ribbon for ALGS reflects the significantly complex and uniquely varying severity of the disease...
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
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
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
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
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
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
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
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
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
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
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...
Binh Wagner Gets Donated Liver
ONTARIO CHILD GETS DONATED LIVER [/fusion_text][fusion_text]TORONTO -- Michael and Johanne Wagner can't express their gratitude enough. The couple...
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
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'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...
Children with Alagille Syndrome have malformed bile ducts
CHILDREN WITH ALAGILLE SYNDROME HAVE MALFORMED BILE DUCTS Serious liver and heart problems can affect children with Alagille Syndrome early in life....
ITCH study shows reduction in pruritus in Alagille syndrome
ITCH STUDY SHOWS REDUCTION IN PRURITUS IN ALAGILLE SYNDROME [/fusion_text][fusion_text] WASHINGTON — In a dose-varied study of maralixibat,...
Identification of Key Mutation in Alagille Syndrome Offers Hope of New Treatment
IDENTIFICATION OF KEY MUTATION IN ALAGILLE SYNDROME OFFERS HOPE OF NEW TREATMENT [/fusion_text][fusion_text] A RARE but potentially life-threatening...
New clues to treat Alagille Syndrome
NEW CLUES TO TREAT ALAGILLE SYNDROME A new study led by researchers at Sanford Burnham Prebys Medical Discovery Institute (SBP) identifies potential...
ALGSA Accepting Applications for Alaina Kaitlyn Hahn Celebrity Scholarship
FOR IMMEDIATE RELEASE Contact Cindy Luxhoj, Executive Director and Founder Alagille Syndrome Alliance...
Alagille Syndrome Alliance e-news January 2018
Alagille Syndrome Alliance e-news December 2017
Alagille Syndrome Alliance e-news November 2017 (FIRST EDITION!)
ALGSA News
RSS Feed
Industry
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...
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
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...
ALGS Research Grants Call for Applications
Alagille syndrome call for research grant proposals Full alagille syndrome research grant proposals must be received by the ALGSA no later than...
The ALGS Awareness Ribbon
ALGSAware The Alagille Syndrome Alliance awareness ribbon for ALGS reflects the significantly complex and uniquely varying severity of the disease...
Binh Wagner Gets Donated Liver
ONTARIO CHILD GETS DONATED LIVER [/fusion_text][fusion_text]TORONTO -- Michael and Johanne Wagner can't express their gratitude enough. The couple...
Children with Alagille Syndrome have malformed bile ducts
CHILDREN WITH ALAGILLE SYNDROME HAVE MALFORMED BILE DUCTS Serious liver and heart problems can affect children with Alagille Syndrome early in life....
ITCH study shows reduction in pruritus in Alagille syndrome
ITCH STUDY SHOWS REDUCTION IN PRURITUS IN ALAGILLE SYNDROME [/fusion_text][fusion_text] WASHINGTON — In a dose-varied study of maralixibat,...
Identification of Key Mutation in Alagille Syndrome Offers Hope of New Treatment
IDENTIFICATION OF KEY MUTATION IN ALAGILLE SYNDROME OFFERS HOPE OF NEW TREATMENT [/fusion_text][fusion_text] A RARE but potentially life-threatening...
New clues to treat Alagille Syndrome
NEW CLUES TO TREAT ALAGILLE SYNDROME A new study led by researchers at Sanford Burnham Prebys Medical Discovery Institute (SBP) identifies potential...
ALGSA Accepting Applications for Alaina Kaitlyn Hahn Celebrity Scholarship
FOR IMMEDIATE RELEASE Contact Cindy Luxhoj, Executive Director and Founder Alagille Syndrome Alliance...
Alagille Syndrome Alliance e-news January 2018
Alagille Syndrome Alliance e-news December 2017
Alagille Syndrome Alliance e-news November 2017 (FIRST EDITION!)
We have many translated resources and we will continue to add to the website. If you have something you’re interested in please email us.
- Caregivers, don’t skimp on taking care of yourself
- Livmarli sustains benefit for Alagille patients over 7 years:...
- Taiwan approves first and only treatment for rare genetic disorder
- Ipsen to refile Alagille drug after EU blocks orphan status
- Long-Term Data from Mirum’s LIVMARLI Studies in ALGS and PFIC Highlighted at EASL Congress
- Long-Term Data from Mirum’s LIVMARLI Studies in ALGS and PFIC Highlighted at EASL Congress
- Long-Term Data from Mirum’s LIVMARLI Studies in ALGS and PFIC to be Presented at EASL Congress
- Bylvay eases itch, signs of liver damage in Alagille, trial data show
- Just a moment...
- Health System News Overcoming Barriers to Conducting Clinical Trials in Childhood Rare Disease Research
- Medication helping local boy cope with ALGS recommended to be more widely available in Canada
- Boy undergoes liver transplant at Hyderabad hospital for rare disease
- 12-year-old boy with Alagille Syndrome undergoes liver transplant in Hyderabad
- Mirum Pharmaceuticals’ LIVMARLI (maralixibat oral solution) Receives Positive Reimbursement Recommendation by Canada’s CADTH for Patients with Cholestatic Pruritus in Alagille Syndrome
- Mirum Pharmaceuticals’ LIVMARLI (maralixibat oral solution) Receives Positive Reimbursement Recommendation by Canada’s CADTH for Patients with Cholestatic Pruritus in Alagille Syndrome
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We have many translated resources and we will continue to add to the website. If you have something you’re interested in please email us.